Huntington’s Disease Association

Newsletter

Huntington’s Dise

Patron: The Count

December 2009

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Specialised Nursing Care for Young Adults Welcome to PJ Care PJ Care is an award winning and leading independent provider of Specialist nursing care for people with restricted mobility and challenging behaviours as a result of organic, degenerative or neurological disorders such as Huntington’s Disease, Acquired Brain Injuries, Strokes, Multiple Sclerosis, Muscular Dystrophy, as well as various progressive terminal illnesses.

Mallard House, Oakley Unit Oakley Unit is on the ground floor of Mallard House, a purpose built Nursing Home situated in the heart of Grange Farm, a local community in Milton Keynes. It provides a safe and homely environment, with specially designed day lounges and gardens landscaped to suit a variety of physical and mental needs. All 29 bedrooms with en-suite facilities are furnished to provide all that a resident may require. Oakley Unit accepts referrals to provide specialist nursing and palliative care to people with progressive terminal

Huntington Disease – our special interest Here at PJ Care Ltd our multi-disciplinary staff team is trained to support people with Huntington’s Disease and pride ourselves in the specialist care we provide. Through continual professional development and research in this specialist field our care team provide up to date help and support to people with Huntington’s Disease and their families. The Home Manager for Mallard House is a member of the Huntington’s Disease Forum and networks closely with other specialist professionals. At PJ Care Ltd we hold an annual Carer’s Day Conference to support those friends and families whose life has been affected by Huntington’s Disease. We set up the first monthly Support Group in Milton Keynes area which is open to anyone who is interested in participating.

illnesses, neurological disorders and complex healthcare needs, such as Huntington’s Disease, Multiple Sclerosis, Motor Neurone Disease, Muscular Dystrophy, Cerebral Injuries and many more. The Multi disciplinary care team ensures everyone receives the highest quality of person centred care and are able to achieve and maintain the highest quality of life in an environment where their physical, psychological and social well being are taken care of.

Sherwood Place Therapy Centre Sherwood Place Therapy Centre offers a wide range of clinical support and therapies all under one roof. Run by PJ Care Ltd, the Centre provides rehabilitation, recovery and ongoing support along with a wide range of other therapies for those with neurological, psychological and physical conditions. At Sherwood Place we provide a full personal rounded package for individual treatment and management programmes.

PJ Care Ltd 1 Sherwood Place, 153 Sherwood Drive, Bletchley, Milton Keynes MK3 6RT Tel: 0870 241 6527 Fax: 01908 649208 Email: [email protected] www.pjcare.co.uk

Contents HDA Newsletter June 2009

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Message From The Chair Message from the Treasurer Donation Form Awareness Week 2009 World Congress - Vancouver Queensland Newsletter World Congress Quality of Life in Huntington’s disease Occupational Therapy Huntington’s Disease Youth Association ‘Stranger on the Shore’ Rhyme and Reason by Trish Dainton Retirement & New Patrons for the HDA Dave Hale’s Nonsense JHD Family Weekend Fundraising HDA AGM 2009 HDA AGM and Family Conference2009 The UK and Ireland Huntington’s Alliance Avon Tyrrell Summer Camp 2009 Mepal Weekend Erroll Walsh Branch News Now that the ‘dust’ has settled Support Groups and Branches of the HDA Feed Back from RCA Team Website Details Staff Contact Details Tributes Forthcoming events

Welcome to the 69th issue of the Newsletter



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Opinions and recommendations appearing in articles within this Newsletter may not necessarily represent those of the Association. Items which include details of accommodation and services are printed in good faith. Complaints: If you are not satisfied with the services we provide please tell us. You can either do so verbally or contact Head Office for a copy of our Complaints Procedure together with the necessary form. Confidentiality and your right to be heard will be maintained. Editorial Panel: Sally Phoenix, Cath Stanley, Brenda Stevenson, Zacharius Editorial Panel: Cath Stanley, Bill Crowder andEleni Becky Davis

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Message from the Chair The last six months have been busy and rewarding for the Association. The continuing financial situation in the Country has meant we have had to continue to look closely at every aspect of expenditure that the Association makes, which is not necessarily a bad thing. Our staff have worked hard to reduce our outgoing costs, and the fundraisers have worked incredibly hard to increase our income. Our financial situation is much improved as a result of this. We have achieved a great deal in this six months. Both Oliver Quarrell (Vice Chair) and Cath Stanley (Head of Care Services) were honoured to be asked to speak at the World Congress. I am delighted to say that we secured funding for scholarships to enable young people to attend the World Congress in Vancouver, Canada in September, and we are looking at other ways to support this age group. We have had 3 summer camps for children, and we are grateful to BBC Children in Need for making this possible. Our JHD weekend was held for the 5th year – one family member commented, “Thanks for another great weekend. I know that everyone benefits from going, I don’t know if you realize how much. It is not just the families that are special, it’s also people like yourself… and all your team, amazing, dedicated people…”. Our RCA team worked with a drama company in the production of a play looking at morals

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and ethics of stem cell research, focusing on HD – this was taken in to many secondary schools in the UK. We have provided training to over 6000 professionals. We have also updated our Standards of Care, Advance Decision to Refuse Treatment publication and produced a specific publication for carers. Our website has received an overhaul and update, you may like to check the calendar on it for forthcoming events. We also held our first residential certificated course for health and social care professionals, which was so popular that we are doing it again in December. We have formed an alliance with the other UK and Ireland HD charities, which will widen our opportunity to raise awareness about HD. You can read about this later in this newsletter. We are delighted that Shane Richie and Tony Hadley have agreed to be patrons of the Association, and look forward to working with them, Tony performed at a black tie charity ball in October in Liverpool to help raise funds for the Association. I would like to take this opportunity to thank individual members for their hard work and dedication in supporting the Association, and also to all of the branches for your unstinting support. In conclusion I am sure you would all like to join me in thanking our very hard-working staff for the incredible job they have done over the last 6 months.

Compliments of the season to everyone.

Carole Carruthers Chair of the Huntington’s Disease Association

Message from the Treasurer Those that attended the very successful AGM were encouraged by the report that I was able to deliver. The 2008/09 accounts showed a significant underlying improvement with general funds available as reserves increasing to approximately £250,000. This is not sufficient to give the Association the stability we all consider essential and therefore reserves will need to be rebuilt in 2009/10 to give us security for the future. Fortunately, current results show the fundraising from statutory bodies, trusts and companies has already exceeded the total for 2008/09 and support from general fundraising and branches has been maintained. The charity’s costs continue to be carefully controlled and the budgeted expenditure for 2010/11 and 2011/12 appears fully sustainable. In conclusion, I would like to thank the fundraising team on behalf of the members and all those who have helped to maintain the work of our charity by securing the finances.

Nick Heath

Treasurer of the HDA Advertisement

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Huntington’s Disease Association Neurosupport Centre Norton Street Liverpool L3 8LR Tel/Fax: 0151 298 3298 E-mail: [email protected] Web: www.hda.org.uk

Feedback from Awareness Week 2009 Awareness week during 2009 saw a host of events throughout England and Wales. Jim Pollard, eminent speaker on HD travelled across from the USA to the UK, where he did a whistle stop tour speaking at study days in London, Wales and Cumbria. He also spoke at a family day in London, and participated in the JHD weekend at the end of awareness week. The focus at the study day in London was palliative care in HD. We also used this day to launch the HDA’s two new patrons, Tony Hadley and Shane Richie. At the time of going to press we are looking forward to Tony performing at an exclusive black tie charity ball at the end of October in Liverpool. We are very excited at the prospect of working with these celebrities in the future to raise the profile of HD. In addition the RCA’s did numerous events throughout the country, and branches up and down the country had a variety of events, some of which you can see in the branch section of this newsletter. Cath Stanley. Head of Care Services. Huntington’s Disease Association.

Letter received from Mr Francis Proudlock: To save on the cost of HDA’s newsletter, I feel that most, if not all of the members who receive the HDA’s newsletter would not mind paying for it. I certainly would not mind paying for the newsletter. It would save a lot of money for the HD association to spend in other important ways. It is twice yearly, so it would not cost individual members very much. I think if every member paid £5.00 per year, it would be a big contribution to the cost of the newsletter. What do other readers think? F. Proudlock

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Feedback from the World Congress in Vancouver 2009 The World Congress in Canada took place over three days. It was in a hotel over looking the harbour, which would have been lovely had we had time to appreciate it! The three days were packed full, and there were many fringe meetings taking place during lunchtimes, before breakfast and dinner. The HDA, in collaboration with EHDN, and Michael Hayden and Blair Levitt, conference organisers, were delighted to be able to secure scholarships that enabled young people from throughout Europe to attend the conference. We look forward to bringing their feedback to you at a later date. It was a fantastic opportunity for them to meet with others in similar situations and share ideas and resources, and just build up that peer support that is so badly needed. There will be a complete write up by a science writer which we will feed back in the next newsletter (or as soon as we have access to it via our website). The Congress runs by having morning plenary sessions which covers topics that all attendees are interested in. It then splits into two themes, care and science. Delegates can “pick and mix” what they choose to attend. This year, a popular, and really useful new addition was the evening news. Charles Sabine showed off his journalistic trade by hosting an evening news session, which consisted of two roving reporters (Ed Wild and

Jeff Carroll) who had, the not insignificant task, of reporting back the days sessions, in a language that could be understood by all. Every time they slipped into a vaguely medical/scientific term Charles would ring a bell, call them to task, and ask them to explain. This was a funny, but valuable contribution as it left everyone (even those whom English was not their first language) with a comprehensive understanding of all sessions of the day. I understand that these reports are gong to be made available on the World Congress website – so keep your eye on www.worldcongress-hd.net. Oliver Quarrell (Vice Chair) presented on the topic living with Juvenile HD, and I was asked to present looking at improving quality of life for HD patients. The tone of the conference was very up beat, and it was great to see so many young people there. Perhaps the most moving presentation was from a young girl who talked about growing up in a family where dad has been diagnosed with HD, she represented the very real hope, that in her generation there may be an effective treatment. Cath Stanley. Head of Care Services. Huntington’s Disease Association.

Huntington’s Queensland Newsletter October 2009 Avoiding a passive lifestyle may delay the onset of Huntington’s Disease The findings of this study were presented at the Christchurch HD Conference 2008. This was a collaborative study between, Virginia Hogg, Lynette Tippett, Richard Roxburgh, Zoe Horton, Veronica Collins, Andrew Churchyard, Martin Delatycki and Kaye Trembath, who are researchers based in Melbourne and in Auckland.

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Background For many years the researchers had been interested in whether environmental factors, such as activity levels, could influence the age at which symptoms begin in individuals with HD. Other research evidence, summarized to follow, had contributed to this interest. Huntington’s disease (HD) mouse-model studies show that rearing mice in an enriched environment delays the onset of symptoms and slows the progression of HD. The only known factor which influences the age of onset of HD symptoms is the CAG number, however this only accounts for between 50% and 73% of the variance at which symptoms appear in individuals. This leaves a lot of room for other factors to have an influence. In addition, research suggests identical twins may have different symptoms and different ages of HD onset. This suggests that lifestyle or environmental factors may affect the age of onset. Evidence from other studies suggests that lifestyle factors, for example, regular activity prior to the onset of symptoms, can delay or ameliorate other diseases, including Alzheimer’s disease.

How was this study done The group in Melbourne had already begun this research and we joined them in conducting questionnaire-based interviews, with 154 (NZ 25 and Australia 129) individuals who had symptoms of HD. The questions were designed to find out about individuals’ lifestyle (before HD), including their participation in leisure and non-leisure activities (education, occupation and domestic duties). Activities were classified as physical, intellectual or passive, and scores generated under the categories; leisure, non-leisure and total lifestyle. These scores were then matched with the age at which the individual began to have symptoms of HD and their CAG repeat length.

What we found After adjusting for CAG repeat size, a more passive lifestyle is associated with an earlier age of onset of HD. That is, for those who had high levels of passive activity (activities that require little initiative and no physical or intellectual challenge) for example watching TV or DVD’s, tended to have an earlier age of onset than those who had lower levels of passive activity. The results suggest that the difference in the onset of symptoms between the group who had the lowest levels and the highest levels of passive activity was 4.6 years (that is nearly 5 years!) A five year delay in the onset of symptoms is significant. Finally (although this was not what we predicted) we found that activity levels for intellectual and physical activities did not affect the age of onset. It is always much more difficult to study humans than mice, we are so much more complex and may be affected by so many more factors (e.g. diet, social support, personality), however this study begins to increase our understanding of possible environmental factors that may affect the age of onset of HD. My colleagues in Melbourne report that the Environmental Modifiers Working Group (with the European HD Network) are keen to look more fully at the impact of activity levels among other things by studying an even larger group of people throughout their life before they develop symptoms of HD.

What can we conclude from this study

The results from this study suggest that, for those people who are at risk, or who have inherited the HD gene should try to reduce the amount of time they spend doing passive type activities (e.g. activities which take no initiative or physical or intellectual challenge). This does not mean that you should be physically and intellectually active 24/7 as rest, relaxation, socialization are important too, rather make sure that you don’t overdo the passive. My thanks to: The participants and their families in both Melbourne and New Zealand for their time and input. Our Melbourne Collaborators, at the Bruce Lefoy Centre for Genetic Health Research. Deb Nagel, Jo Dysart and Lynne Farrow from the Waikato, Auckland and Wellington HD Associations and Margaret Simmons Amaryllis House for their help. Professor Richard Faull, for his support and the Mathew Oswin Trust, and the New Zealand Health Research Council. Virginia Hogg, HD Researcher Acknowledgement: Huntington’s News, Newsletter Huntington’s Disease Associations of New Zealand, June 2009, Issue 105

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Feedback from the World Congress Quality of Life in Huntington’s disease Albert Einstein once said, “Not everything that can be counted counts, and not everything that counts can be counted.” Now, ‘quality of life’ is something we all recognise as intrinsically important, and so it certainly falls into the ‘worth counting’ category… but, what exactly is it, and how do you ‘count’ it? These two questions are particularly pertinent in the context of an illness like Huntington’s disease, where the lives of people living with Huntington’s and those close to them can be drastically altered by the unrelenting course of this disease. At present there is no recognised way of measuring quality of life in people affected by Huntington’s in a manner that addresses all issues relevant to the experience of living with this disease. Little research has aimed to understand the first hand experience of living with Huntington’s, and how quality of life may be affected. There is no specific questionnaire that captures the experience of living with Huntington’s. Such a ‘patient-reported’ assessment of quality of life will be essential in order to document and convey patients’ or relatives’ perspective of how much or little their everyday lives are affected at any one point in time. The situation is different, in Parkinson’s disease for example, which is also a neurodegenerative condition, since there is a Parkinson’s specific questionnaire designed to capture all the relevant aspects of living with that disease. ‘Patient-reported’ assessment of quality of life is now increasingly recognised as important to have, alongside other established clinical measures such as motor, cognitive and psychiatric assessments. A quality of life questionnaire that is specific to Huntington’s disease could effectively help with planning and evaluating of treatments and policies as they directly reflect how a person living with Huntington’s feels about their condition. The creation of a disease specific Huntington’s

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quality of life questionnaire is a key objective of the European Huntington’s disease Network’s Quality of Life Working Group. We believe this work is fundamentally important, and will link in with current attempts to develop novel drug treatments for Huntington’s disease. In future drug trials, a well developed and robust patientreported outcome measure will help to evaluate if there are any meaningful changes from the patients’ point of view. For example, if a new drug improved one aspect of disease but the associated side effects had an overall negative effect on a patient’s daily life, then the quality of life questionnaire would be able to reflect the patient’s overall perspective on these outcomes. The scientific process of developing a robust and finely-tuned disease-specific questionnaire can be likened to that of creating a finely-honed sculpture. It involves the step by step transformation of an abstract idea or concept into a solid and tangible object.

Raw Material

Sculpting Process

Refined Product

Firstly, in a series of face-to-face interviews in the U.K., we visited people living with Huntington’s and their partners, and listened to their first hand experiences in order to understand in depth the many, and sometimes subtle, ways in which Huntington’s affected their everyday lives. Like the master sculptor starting out with a large and roughly hewn chunk of marble, these hours of

recorded conversations about people’s personal experience gave the crucial foundation from which we could develop a questionnaire. We then distilled this interview material into a list of questions that we could take back to people living with Huntington’s, to see if they were relevant and adequately represented their everyday experience. We put this long-list of 81 questions to the international community, to get feedback from a large number of other people living with Huntington’s disease across Europe and also Canada. The responses and feedback obtained from this long list of 81 questions directed further efforts at reducing and rephrasing the questions to arrive at a better and shorter questionnaire which would be easier to complete, without losing important information. This process of chipping away at the material under the watchful eye of the sculptor is necessary in order to transform the marble chunk to yield a more clearly defined structural form. We have now reached a critical and exciting stage where we have a prototype 40-item questionnaire which we would like to pilot test. Since this European Huntington’s disease Network quality of life initiative is a UK-led project, the first pilot testing of the prototype Huntington’s quality of life questionnaire will take place in the U.K. You are therefore invited to take part in this pilot testing of the questionnaire in order to shape and refine it further. In order to do this successfully, we need many people living with Huntington’s and their companions to volunteer to complete the questionnaire. There are two versions of the questionnaire included as an insert to this newsletter; 1) a YELLOW Huntington’s pack for people living with Huntington’s (including individuals who are at risk, gene positive presymptomatic, and symptomatic), and 2) a PINK pack for partners and/or carers. We would be most grateful if you would consider participating in this pilot test by going through the instructions in the respective questionnaire packs; if you have any questions or concerns, please get in touch with us (contact details below and in the packs). We appeal to you to join us in this exciting endeavour, as we seek to develop a questionnaire

that will convey the perspective of people living with Huntington’s. Your time and effort in participating in this important and unique project will be invaluable to the success of the project, and will be part of a lasting legacy in providing the Huntington’s community with a new way in which their voices can be heard.

If you would like further information or have any questions about the Quality of Life project please contact us at: Huntington’s QOL project, University of Reading, Department of Psychology, Earley Gate, Reading, RG6 6AL (E-mail: [email protected], Telephone:0790 888 1531).

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How to get involved? Please fill in the YELLOW and PINK questionnaire packs attached to this newsletter

Very many people have already contributed to the realization of this project, and we cannot thank enough everyone who has welcomed us to their homes, shared their personal experiences with us, and freely given of their valuable time and energy to help us. We would also like to thank and acknowledge the Huntington’s Disease Associations across the U.K. and Republic of Ireland for their continuous support. By Dr Aileen Ho and Ms Mev Hocaoglu (Department of Psychology, University of Reading), on behalf of European Huntington’s Disease Network (EHDN) Quality of Life Working Group

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Acknowledgement: Newsletter – AHDA (Qld) Inc – May 2009

OCCUPATIONAL THERAPY Occupational Therapy in Early Stage HD As cognitive changes begin to occur, an occupational therapist can help the person with HD and family members develop compensatory strategies. By employing these strategies early in the disease process, the person with HD learns that he/she can have some control over the disease and is therefore less apt to feel helpless.

Memory Strategies • • • • •

Offer hints, such as word associations, to aid in the retrieval of information Use lists, calendars and notes Establish a consistent daily routine Label items around the house Avoid open-ended questions. Instead, offer a list of choices and ask questions requiring a “yes/no” answer. Difficulty in sequencing tasks is another common problem experienced in the early stages. Family members report that tasks that used to be completed in a few hours now take all day or are never completed at all. The strategies listed below can help to remedy this problem.

Planning Strategies • • • •

Write down all tasks in a logical order Review the steps to ensure that they are clearly understood Break complex tasks down into parts Encourage completion of each step prior to moving on to the next step in the task

Concentration Strategies • • • •

Use short sentences when giving directions Ask the person to repeat important points back to you Reduce outside stimuli whenever possible Underline key points in directions or recipes

Safety in the House

A home consultation by an occupational therapist can identify unsafe practices and provide suggestions to improve safety. Analysis of meal preparation skills, personal hygiene, and other activities of daily living (ADL’s) can lead to strategies which foster independence. Here are some examples:

In the kitchen • • • • • •

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Use unbreakable dinnerware Avoid storage of commonly used items in high cabinets Use a kitchen timer as a reminder to turn off appliances Lower the hot water temperature to prevent scalding Use covered mugs for hot liquids Use oven mitts rather than potholders

In the bathroom • • • •

Use a non-skid mat in the tub or shower Use ‘soap on a rope’ Use a shower bench or chair Use safety bars

In the Living Room and Bedroom • • • • • •

Stabilize furniture so that it cannot move Use chairs with high backs and armrests Clear rooms of any unnecessary furniture Remove scatter rugs or thick pile carpeting Keep tables and lamps away from walkways Pad doorways and furniture when contact is frequent

Occupational Therapy in Middle Stage HD The combination of motor control problems and cognitive deficits creates a number of difficulties in activities of daily living. Again strategies and equipment can be of great use in prolonging independence.

Eating Problem

Impaired postural control creates positioning problems at the table. Slouched sitting and inability to maintain proximal stability cause a great deal of food spillage as well as fatigue.

Strategies

• Have the person sit in a sturdy chair as close to the table as possible • He/she should wrap legs around legs of chair to stabilise the pelvis and put elbows ON the table to stabilise the upper trunk

Problem

Motor impersistence and muscle weakness cause difficulty holding onto utensils, or difficulty bringing hand to mouth.

Strategies

• Use utensils with built-up handles • Utensils should be put down after each bite, to rest muscles and prevent fatigue

Problem

Inco-ordination of movement makes simple tasks such as cutting food seem very difficult.

Strategies

• Use non-skid placemat to prevent dishes from moving • Use covered cups or mugs (travel mugs are ideal) to prevent spills

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Hygiene Problem

Difficulty with motor planning and sequencing tasks can make even the most routine activities seem insurmountable. Though some people with HD lose interest in personal hygiene as a result of depression, this apparent lack of interest is often a result of diminished planning and sequencing ability.

Strategies

• Divide morning and evening routines into simple steps • Write out steps for completing all hygiene tasks and post in a visible place

Problem

Maintaining balance while performing everyday tasks, such as shaving or brushing teeth, can become difficult and even hazardous.

Strategy

• Use a shower bench or chair to prevent fatigue and assist with balance

Problem

Combining a fine motor task, such as holding the soap, with a gross motor task, such as washing the torso, also presents difficulties.

Strategies

• Use a shower mitt (the soap can be put right inside the mitt so it won’t fall out) or ‘soap on a rope’ • Use an electric razor or chemical hair remover • Build up handle on toothbrush or hairbrush by wrapping and taping a washcloth around it

Problem

Fatigue often plays a role in preventing the completion of tasks.

Strategy

• Build rest periods into the routine

Dressing Problem

Decision-making ability may cause people with HD to avoid changing their clothes because they have difficulty deciding what to wear.

Strategies

• As with other complex tasks, reduce the routine to simple steps • Label and pair favourite items so that decision-making is kept to a minimum

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Problem

As the small muscles of the hands weaken, ability to grasp objects is diminished.

Strategies

• Avoid clothing with multiple fasteners • Put a ring on zippers to aid in opening and closing • Encourage dressing while sitting in a sturdy chair to reduce falls and fatigue

Problem

Lack of initiation – the inability to start a task – may necessitate a ‘jump-start.’

Strategy

• Suggest an activity or task and offer help. Often this will provide the necessary impetus for the person to complete the task independently

Occupational Therapy in Late-Stage HD In the later stages of the disease, preventing injury to the body becomes of the utmost concern. Although some people with HD appear to be moving all the time, they are often not able to change position voluntarily, and therefore are susceptible to skin breakdown from constant shearing movement. The occupational therapist can assist the caregivers by suggesting a routine of position changes. The OT can also assist in designing a protective environment for the person with a lot of choreic movement. Padding of hard furniture, wheelchair parts and sharp corners help to prevent injury from falls or choreic movements. In cases of very severe chorea, it may be necessary to pad a part of the body if constant contact is being made. Because the person with advanced HD is no longer able to control movement, certain muscle groups are no longer used. This disuse, combined with changes in muscle tone, can lead to permanent disability called contracture.

Contractures

A contracture is a permanent shortening of a muscle. Contracture management in HD can be difficult because of fluctuations in muscle tone and the presence of chorea. Frequent position changes and a range of motion exercises are important weapons in the battle against contractures. In some cases splinting can be helpful. New air-assist-type splints, which use air bladders to provide support and have enough ‘give’ in them to avoid skin breakdown, have proven very helpful in the management of elbow and knee contractures. Foam core and hand splints have also proved useful for maintaining functional positioning of the hand. These are very lightweight and have a washable cover for easy care. Many people are able to wear splints during the night. This gives them eight to ten hours of appropriate positioning and slows down the contracture process.

Conclusion

Today, more than ever, there is hope for people with Huntington’s disease. Rapid progress is being made toward potential treatments for HD. Likewise, quality of care for people with HD has improved greatly in recent years. By seeking early intervention from health professionals such as physical, occupational and speech language therapists, the person with HD can have control over the disease and over his/her life. By learning strategies to help them cope with the many changes that are brought on by Huntington’s disease, people with HD can live meaningful, productive lives well into the final stages.

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Huntington’s Disease Youth Association In February this year the HDA held its first ‘young people’s conference’ for people aged 18-35(ish) with HD in the family. The aim was to bring young people together, allowing the chance to discuss issues such as ‘testing’, ‘having children’, and current research. The feedback was excellent and the overwhelming response was that people were glad to meet others in a similar situation. Following the conference we were asked to help develop the EHDN Working Group for Young People. This group met earlier this year and will meet again in November with the aim of meeting the needs of young people across Europe. We went on to secure 9 scholarships to enable young people across Europe to attend the World Congress in Vancouver. This was an opportunity for them to hear firsthand the latest research from the top scientists and

meet young people from across the world. The latest meeting of young people was a workshop at the AGM, it was decided that we should form the HDYA. From this a facebook site has been set up (at the time of writing it has been running for a week and has over 300 ‘fans’). A yahoo group will soon follow. One aim of the group is to have a specific page on the web for young people. The second ‘young people’s’ conference will be held from 12pm Saturday 27th February to 1pm Sunday 28th February 2010 at the Telford Hotel & Golf Resort, Great Hay Drive, Sutton Heights, Telford , TF7 4DT. The conference costs £45. Topics to be covered include testing, children, relationships, Physiotherapy, getting involved in research or fundraising. Please contact head office for a booking form. For more information on the HDYA please contact [email protected]

‘Stranger on the Shore’ ‘Stranger on the Shore’ is the title of my book, published this year, by Shepheard-Walwyn, about my Father. He and two of his six sisters died of Huntington’s disease. Dad was the last to die, in 1972. It took years to gather the material for the book. I wanted to do justice to Dad, and to Mum, and the lives they lived. Both were amazing people. I also wanted to try to explain how Huntington’s affects the whole family, neighbours and friends, everyone you come into contact with, - and how we can cope as it changes our lives even if often we cannot help feeling like a ‘stranger on the shore’. Readers of my book, of course, are mainly people with no link with Huntington’s. The letters and comments that I have received have taught me that many of them have, in their own way, experienced the sense of loss and sadness felt so strongly by Huntington’s families. Readers have found the book gripping and uplifting. In writing the book, I have learnt again all that my parents taught me about finding meaning in life through those many years that we had together, accompanied by Huntington’s but also with so much joy and consolation. ‘Stranger on the Shore’ by John Symons is published by Shepheard-Walwyn (ISBN 978-0-85683-264-2). It is available from bookshops and from the publisher (telephone: 020 8241 5927).

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Rhyme And Reason When the rally call came from another HDA Member to think creatively for an awareness campaign I put my thinking cap on and tried to think of what had grabbed my attention when travelling on the London Underground. I recalled posters featuring poetry from members of the public under a competition called ‘Poems on the Underground’ and it got me thinking... What if HD were described in a poem? Having decided to make a stab at writing something, it soon became clear the subject matter was far too complex for one poem to do it justice. Another poem was therefore written, and then another, and another... Knowing that the HDA were discussing ways to raise awareness and funds at the forthcoming AGM I submitted the poems already written. This was with a view to working on a combined fundraising project. Much to my surprise the idea was picked up on and I was even encouraged to try composing something in time for the World Congress in Vancouver! A collection of poems, entitled ‘Curse in Verse’ and all nicely printed and bound by the HDA, was given out at the Congress by Cath Stanley. The collection included three poems especially written for Cath to help compliment her presentation on the ‘Quality of life for families with HD’. Here is one of them:

The Normality The children playing on the beach, The mother taking sun. The father too on holiday, A family having fun. A common scene you’d like to think, But look again, you’ll see; The father in a wheelchair, One child with JHD. They’re at a special Centre, But the wife has had to fight. Resources are so scarce it’s sad, They are not there by right. For one week only of this year, They block out their HD, And feel the thing they long to have, That thing..? Normality! It’s clear just from looking at the above poem the works are not likely to win any literary prizes but that’s not the point. Apart from finding writing became a form of therapy for me (My husband Stephen has HD and I am his full time carer), the poems hopefully help capture the frustrations of the illness from a wide range of angles. (Continued overleaf)

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Grouped in six categories, from research to society’s judgement, the poems try to represent HD not just from my own perspective as a carer but from those ‘at risk’ and those at various stages of progression. This one – The Sibling – tries to convey how families can be divided on their approaches to wanting to know about HD status. It also touches on how those on the outside might not recognise the repercussions of testing.

The Sibling Both have grown up, to live with HD, Their grandpa and aunty affected. They know that their dad is at risk as well, But attempts to discuss are rejected. One sibling is eager to know of her fate, The other is keen to ignore. One feels that a family and children can wait, But the other is hungry for more. The answer is simple to those looking in; Why doesn’t the sibling just test? But even the route to have testing begin, Will open a whole hornet’s nest. The laid back sibling is quick to remind her, It’s not only your life at stake; If you have the gene, then you know that will mean, It’s dad’s and my heart too you’ll break! Whilst it’s fair to say some of the poems could merit sponsorship from Kleenex Tissues, such is the nature of the beast, there are some light hearted ones too and I have tried to balance the sadness of the illness alongside hope as well. Copies of Curse in Verse are available from the HDA priced £2.50 plus postage. An e-book version is currently being produced but soft copy in MSWord format is available direct from me via my Justgiving Page www.justgiving.com/Trish-Dainton A minimum donation of £2.00 is requested for copies via the Justgiving Page please. As with the hard copy all proceeds are going direct to the HDA. Trish Dainton

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Retirement of Neil Glendinning from the Executive Council After many years of dedicated service both as a GP, and as an active member of the executive council, Neil has retired from the Association. We will miss Neil’s wisdom and expertise, as well as his knowledge and drive. Neil was instrumental in getting the JHD project off the ground and has written and contributed to many publications. On behalf of the Association I would like to thank Neil for all of his hard work. The Association presented Neil with some engraved glasses as a small token of their gratitude.

New Patrons for the HDA

As you will have read in the last newsletter, we were pleased to announce Tony Hadley as our new Patron. At that time, we were close to having Shane Richie agree to join him. Soon after the printing of the June 09 newsletter, Shane became Patron of the HDA too.

Tony and Shane helped launch the Huntington’s Alliance in June, and this was their first appearance as Patrons. Tony Hadley, lead singer of band Spandau Ballet, said: ‘A relative of mine recently died from Huntington’s disease and I saw first hand what it does and how debilitating the disease can be. If I can help in any way to raise the profile of Huntington’s, and at the same time raise as much money as possible to aid research, I will be there 100%.’ Shane Richie said he first became aware of the disease a few years ago when it featured in a plot in the soap opera Eastenders, in which he was starring as the character Alfie Moon at the time. ‘It wasn’t until I sat down and did some research that I realised what a tough time the families of people with Huntington’s disease have,’ he said. ‘Raising money is one thing, but raising awareness is another,’ he added. ‘Once you start raising awareness you get a snowball effect - more people start getting involved, and then you start to get the money.’ We are really grateful for the support that Tony and Shane will provide over the coming years.

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Dave Hale’s Nonsense Words of Wisdom

I am in shape. Round is a shape. Time may be a great healer, but it’s a lousy beautician. Never be afraid to try something new. Remember, amateurs built the ark. Professionals built the Titanic. Conscience is what hurts when everything else feels so good. Talk is cheap because supply exceeds demand. Even if you are on the right track, you’ll get run over if you just sit there. Politicians and nappies have one thing in common. They should both be changed regularly and for the same reason. An optimist thinks that this is the best possible world. A pessimist fears that this is true. There will always be death and taxes; however, death doesn’t get worse every year. In just two days, tomorrow will be yesterday. I am a nutritional overachiever. I am having an out of money experience. I plan on living forever. So far, so good. Practice safe eating - always use condiments. A day without sunshine is, like, night. If marriage were outlawed, only outlaws would have in-laws. It’s frustrating when you know all the answers, but nobody bothers to ask you the questions. The real art of conversation is not only to say the right thing at the right time, but also to leave unsaid the wrong thing at the tempting moment. Brain cells come and brain cells go, but fat cells live forever. Age doesn’t always bring wisdom. Sometimes age comes alone. Life not only begins at forty, It also begins to show. You don’t stop laughing because you grow old, you grow old because you stopped laughing. The most effective way to remember your wife’s birthday is to forget it once. What’s red & invisible? No tomatoes!

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Questions questions questions... Why doesn’t Tarzan have a beard? Why do we press harder on a remote control when we know the batteries are flat? Why do banks charge a fee on ‘insufficient funds’ when they know there is not enough? Why do Kamikaze pilots wear helmets? Why does someone believe you when you say there are four billion stars, but check when you say the paint is wet? Whose idea was it to put an ‘S’ in the word ‘lisp’? What is the speed of darkness? Why is it that people say they ‘slept like a baby’ when babies wake up every two hours? If the temperature is zero outside today and it’s going to be twice as cold tomorrow, how cold will it be? Do married people live longer than single ones or does it only seem longer? How is it that we put man on the moon before we figured out it would be a good idea to put wheels on luggage? Why do people pay to go up tall buildings and then put money in binoculars to look at things on the ground?

Did you ever stop and wonder..... Who was the first person to look at a cow and say, ‘I think I’ll squeeze these pink dangly things here, and drink whatever comes out?’ Who was the first person to say, ‘See that chicken there... I’m gonna eat the next thing that comes outta it’s bum.’ Why do toasters always have a setting so high that could burn the toast to a horrible crisp, which no decent human being would eat? Why is there a light in the fridge and not in the freezer? Why do people point to their wrist when asking for the time, but don’t point to their bum when they ask where the bathroom is? Why does your Obstetrician, Gynaecologist leave the room when you get undressed if they are going to look up there anyway? Why does Goofy stand erect while Pluto remains on all fours? They’re both dogs If quizzes are quizzical, what are tests? If corn oil is made from corn, and vegetable oil is made from vegetables, then what is baby oil made from? If electricity comes from electrons, does morality come from morons? Why do the Alphabet song and Twinkle, Twinkle Little Star have the same tune? Stop singing and read on.......

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JHD Family Weekend 2009 The fifth JHD Family Weekend was held last June at the Calvert Trust in the Lake District. The weekend is for young people with JHD, their parents and siblings and gives them a chance to meet other people in the same situation as well as trying out a whole range of fun activities! This year we were really lucky with the weather, which is always an added bonus in the Lake District! On the Saturday evening we had a “Hawaiian” party, complete with tropical cocktail bar, coconut glasses, grass skirts and flower garlands! I think we managed to get everyone in a grass skirt or flower garland – which isn’t always easy! The temperature in the room seemed to add to the effect as well!! It was a fantastic evening, and I know that I at least will have some great memories from it for a long time to come. Next year the weekend will be from the 4th-6th June, and will be held at the Calvert Trust again. If you would like to join us or would like to find out more about the weekend, then please get in touch with me – Helen Santini - on 01279 507656. Finally, a big thank you to everyone who came – both to the families that came and to all the people that came to help out or speak at the weekend – you all contribute so much to the weekend. I’d also like to thank the Barbara Ward Children’s Trust, BBC Children in Need and the Sylvia Adams Children’s Trust who all supported the weekend and made it possible.

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Kat Harbourne I ran the York 10K ‘run for all’ on 2nd August 2009 in honour of my mum, Jane Harbourne who died in March this year aged 54 after having been diagnosed with HD 15 years ago. I wanted to raise money for the HDA as well as do something to make her proud. She used to love reading women’s weekly magazines, the trashier the better, so I ran in a tutu with a Chat magazine theme that my Aunty Liz made for me! I have now raised just over £1500, been on Radio York, and Chat magazine to talk about HD. I wanted it to be a happy occasion to remember my mum.

Ruth Sands Ruth, Stephanie and myself ran/walked the Addidas 5k Women’s Challenge in September for the HDA and the London Branch of the HDA, between us we have raised over £670.

Fundraising Team Update The Fundraising team are now well established and have continued to be busy securing funding from Trusts, Foundations and Statutory Authorities. We have also had the opportunity to attend training and workshops with Local Authorities and in the Private Sector; including the Funding from the Rich Conference, organised by Richard Branson. We continue to maintain regular contact with our Regional Care Advisers and attend HDA events whenever possible, this keeps us motivated and committed to continuing to pursue all possible sources of funding on behalf of the Association. Carolyn McGlamry

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Karting boost for research by Trowbridge friends A group of petrolheads spent 24 hours racing around a track in go karts for charity recently. The group were raising money for the Huntington’s Disease Association because the wife of the race organiser suffers from the rare and debilitating condition. Martin Maskelyne’s wife Julie, of Trowbridge, was diagnosed with Huntington’s disease six years ago. Martin decided to organise the race to raise funds for research into the disease, which Julie’s sons stand a 50 per cent chance of developing. The three boys all took part in the event, at M4 Karting in Hullavington, and Julie started the race off on Saturday lunchtime. Martin said: “It was brilliant. Everyone enjoyed it. “Julie was up there; she started the race off and finished it with the chequered flag. Her sons all took part too.” A representative from the HDA was there on the race day to provide information. Martin also said that organising the race had led him to meet other people in the area affected by the disease. “A lot of people came up to watch and put in some money for the charity,” he said. “There were 36 drivers in five teams taking part - everyone had a day off on Monday to recover. “At night time it started to hit home a little bit. Some of them were getting a bit tired. But when day broke through everyone chirped up again.” He said he is still collecting money from each of the teams and will present a cheque to the charity once all the money is collected. He added: “I’d like to thank Mr Carter at Bookers in Trowbridge who gave us some energy drinks and everyone who turned up and took part. We had a really good weekend.”

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Pulling for Huntington’s In June this year, Sarah Winckless joined Tony Hadley and Shane Richie in the launch of the Huntington’s Alliance of England, Wales, Northern Ireland, Scotland and Ireland. As Patron of the Scottish Huntington’s Association, Sarah was already planning how she could raise £10,000 in 10 days – the first £5,000 of which would go to the SHA, and all money thereafter would Victoria and Sarah presenting the cheque be shared equally around the newly formed Alliance. Her Olympic-sized ambition was matched by her understandable concerns that this huge target could be a step too far, and could even lose face for the new Alliance. Together with her friend and former Commonwealth rower Victoria Wood, they hatched a plan to get sponsored to race the top doubles event at the Women’s version of the famous Henley Regatta. Both retired athletes with successful careers behind them, they faced the added challenge of having never before sat in a boat together - their work was cut out to not bring shame to the campaign on all levels! Their fundraising plan – entitled Pull for Huntington’s – captured the imagination of the rowing fraternity, and became a near crazed internet phenomenon within it. With tremendous support from the rowing cognoscenti, the campaign launched with gusto and the 10 day total was soon blown to smithereens. Indeed within just 2 days of launch, they had hit over £17,000. And the money kept flooding in. The Henley Women’s Regatta took place on the weekend of 20th and 21st June 2009. Sarah and Victoria won their heats on Saturday but were beaten in the semi finals on the Sunday. Not bad for a pair of old dears! However, their loss was the Huntington’s campaign gain, as they then set about raising another £1500 selling tee-shirts at the regatta and, fuelled by Pimms, they shamelessly took money from anyone unsuspecting enough to engage them in conversation. On 23rd September, Sarah and Victoria joined the members of the Alliance and presented a cheque for £28,617.93, and more was still being totted up. We would like to thank Sarah and Victoria for raising such a huge amount and raising further awareness of Huntington’s disease and the new Huntington’s Alliance. Victoria and Sarah rowing at the Henley Women’s Regatta

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The Provincial Grand Lodge of Mark Master Masons of Hampshire and Isle of Wight The Hampshire and Isle of Wight Province of Mark Master Masons have worked hard this year to raise much needed funds for the HDA. Each year the Provincial Wardens run a raffle for the Provincial team at every visit made to Lodges during the year in office, with the sole purpose of raising money for good causes. This year they raised a total of £1500 which was kindly received by Eve Payler Hampshire and Berkshire RCA. They have continued to raise a further £200 towards this total. Nigel Wilkinson has experienced the affects of HD first hand and understands the valuable work that the HDA does and we would like to thank him and Steve for their hard work.

Eve Payler received the cheque from W Bro Steve Groeger and W Bro Nigel Wilkinson

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HDA AGM 2009 Report by Jaq. Huntington’s Disease Association Conference 2009

The HDA conference is an annual event which has been held in various locations in England over the years but most recently has been held in Telford. It takes place over three days and is an opportunity for people affected by or with an interest in HD to get together. There is some serious stuff, some science stuff and lots of fun stuff. It is an opportunity to share experiences, information and knowledge with others in a similar situation.

Friday 2nd Oct The weekend starts here.

The first events were a series of workshops. They were an opportunity to share personal experiences of HD or just listen to those of others. Everyone understands what each other is faced with and words such as ‘angry’ ‘disappointed’ guilty’ were used as talking points. There was another workshop going on at the same time to discuss the Regional Care Advisers roles within the HDA. Later there was a workshop for conference newbie’s, with team games used as an icebreaker. This is useful for anyone attending alone as you have made a whole new set of friends before dinner.

Aloha

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After a chat in the bar or quick shower the weekend proper begins. We had been promised a quiz with a twist and were greeted at the tables with RCA’s in hula skirts and Hawaiian shirts and each given a garland (they have a name but I don’t know it). Dinner was followed with a quiz but the highlight had to be the Piñatas. These were papier mache donkeys which you beat with a stick. Fun for young and old alike especially when whacked hard as they release a waterfall of small gifts and toys.

Saturday 3rd Oct This is the main day of the conference and many people come for the Saturday and then return home.

Dance Mats!!

The first speaker was Ruth Sands. She works for the HDA but was also a Physiotherapist. Like most Physiotherapists the main message was exercise exercise exercise but make it fun. As well as the usual things like walking, going to the gym etc she also reported on a study which said dance mats have been studied and they seem to improve balance and coordination; both important for people with HD. Also comes in useful when the DJ plays The Time Warp at the disco so you take a step to the left rather than the right thus avoiding sending the rest of the dance floor toppling like dominoes.

A Personal story

The next speaker was a branch member called Sandra Taylor. She gave a personal account of her own and her family’s experiences with HD. These personal talks are always one of the highlights of the weekend. A couple of years ago the Olympic medalist Sarah Winckless also gave a very personal and moving talk. After lunch the topic changed to fundraising, with Jo Shepheard, ideas and advice on the best way to organise and run and event. The most bizarre idea was a human pigeon race so if anyone has any wild and wonderful fund raising ideas go for it and report back next year.

The Science Bit

The penultimate speaker was researcher Ed Wild. He gave an overview of the latest research and really gave a sense of hope. There are a range of trials going on all over the world some to switch off the gene itself, some to delay onset and some to offer relief of symptoms. Ed summarised the trials and the spoke the words everyone in the room wanted to here. Promising, promising, very promising. This is the second year where the science bit has given real hope for the future and for young people this is fantastic news. The phrase Ed used several times was HD the most curable, incurable disease.

Charles Sabine Reasons to be Cheerful

The final speaker was journalist Charles Sabine who again shared his personal experiences. Both he and his brother have tested positive for the HD gene. Like Ed he was optimistic about the research and felt there was a real sense of hope that something was coming soon. Having worked as a war correspondent around the world he acknowledged that HD was now the hardest battle he would have to fight but stressed how important awareness and openness was. He told a story about something he had witnessed when he was reporting from Iraq. He had seen a young girl who had carried her brother over 90 miles to escape the terrors and emphasised how families affected by HD also have courage and a spirit of endurance that was very special.

Charles Sabine is an important name in the HD community. As a journalist he speaks very well and really gets his message across to the audience. Watch out for his name in the coming years. Something both Ed and Charles did stress that while trials are taking place all over the world, getting tested for HD just to be involved in trials was not the best reason.

Dinner Dance - Let’s do the Timewarp.

After a tasty dinner and two deserts (thanks Matt) it was time for the disco to begin and time to put all those dance mat moves into action. With a mix of old favourites from ABBA and the Village People to some modern thumpy stuff for the young un’s and even The Jam for us Indie kids the disco was fun as usual. It feels like one big family party with kids running round like aeroplanes, good and bad dance moves and everyone up dancing like no one is watching.

Sunday – Morning Workshops

Sunday is a chance to catch up with friends old and new and attend one of the many workshops. One which was very successful was a youth workshop and there are lots of great ideas coming out of this. Another workshop discussed what had been said at the recent World Congress for HD in Vancouver, Canada. For those with some energy left over from the dinner dance there was an exercise class/yoga/ God knows what else. Needless to say I didn’t attend that one… After a cup of tea and some lunch it was time to say goodbye to everyone. Another great AGM, thank you to the HDA for putting it all together, and we will be back next year!

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Feedback from Huntington’s Disease Association Family Conference and AGM October 2009 What a weekend! The family conference marks the most important event in the HDA’s calendar, it provides the opportunity for families, branches, executive council and staff to come together and share experiences, gain knowledge but also have a really good time! A lot of preparation goes into ensuring the event runs (almost!) seamlessly, Head Office (i.e. Karen and Mark!) work tirelessly in the weeks before to ensure rooms are booked, packs are made up, and generally things are on track. Bill and I visit the hotel to go over the finer details, train the staff and generally (hopefully) ensure that the weekend flows smoothly. The booking of speakers/planning of workshops starts the day after the previous conference! Looking at new and innovative ideas to make the evenings a bit special and fun is my job! Then the weekend arrives……..! It is lovely to be able to greet old friends as they arrive on Friday for registration. So many hugs are good for the soul! It was really good this year to see so many new faces, who by next year will be old friends. On Friday we had two workshops, one offering the opportunity to share their experiences with each other, the other to explain the role of the RCA. There was then a welcome workshop to allow those who had never been before to get a glimpse of what they had let themselves in for…..there were some amazing paper creations that came out of that!

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We decided (that will be the royal we!) we would offer a bit of a twist to the evening, and bring a bit of sunshine to an October night, so it was a Hawaiian theme to the evening.

Even the quiz had a Hawaiian theme to it! Perhaps the most worrying round though, was the picture round. This consisted of photographs of staff pets that people had to match with the staff member – a very worrying amount of people got this right – do I really look like a golden retriever and long haired dwarf lopped bunny – don’t answer that! A few drinks in the bar, and the evening was over. Saturday dawned; the tropical paradise of a room had been transformed into a conference room! It is always a challenge to get the balance of speaker’s right. The day started with the business meeting. We then had an excellent presentation from Ruth Sands, RCA for North London, who trained as a physiotherapist, who looked at some of the interventions that can help in HD. The take home message was access a physiotherapist! Sandra Taylor, a long standing member of the Sussex branch, then took us through her life journey of HD. She brought home the person she is despite HD. Jo Shepheard then took us through some amazing and different ways to fundraise – her take home message was fundraising should be fun, bring money in, and mad ideas are the best for capturing attention.

We then had an inspirational update on research from Ed Wild, who pointed out that we should remain optimistic for an effective treatment as research is moving forward so quickly.

All too soon it was time for bed, but not before the HD family joined together to sing you’ll never walk alone, and hopefully that is the take home message from the conference. That feeling of community and spirit. Our final speaker for the day was journalist Charles Sabine. He talked about reporting from many war torn countries, being in danger, but felt that being at risk to HD offered more of a challenge to him. He offered hope and inspiration to many.

Some people then went home, but the majority stayed to enjoy the evening celebrations, and what celebrations there were! People had either a large cracker which contained daft faces etc, or a large present which had an assortment of items in, everyone joined in the fun! Then the dancing began, it was lovely to see young and old on the dance floor, and the fact that everyone, and I mean everyone (well almost Matt!) danced the night away.

Sunday saw a host of workshops. There was feedback from the World Congress, Smoking Cessation, Relaxation and Exercise, Fundraising and a work shop specifically looking at what young people would like from the HDA (what a lot of ideas came from that!). All too soon it was time to go home, lots more hugs; my favourite comment on the evaluation form was the worst bit about the conference was going home!

So, if you have never been before, do think about coming next year – and if you come every year, I look forward to seeing you there! Cath Stanley.

Head of Care Services. Huntington’s Disease Association.

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The UK and Ireland Huntington’s Alliance “Working As One” The four Huntington’s disease charities throughout the UK and Ireland have come together to form The UK and Ireland Huntington’s Alliance’. The aim of the collaboration is to make as many people as possible aware of this rare disease and its devastating effect on whole families. The UK and Ireland Huntington’s Alliance aims to: • Shape the debate on the care and support of people with HD and those affected by it • Work with young people from Huntington’s families in order to educate and prepare them for the years ahead. • Provide opportunities to share information and intelligence • Act collectively where appropriate So far the Alliance has been launched in London and Belfast. The launch in London during Awareness week in June was the first time all four Huntington’s Associations had publicly got together, and this was attended by representatives of each of the Associations. The event was also the first time the HDA ‘unveiled’ Tony Hadley and Shane Richie as new Patrons. Sarah Winckless supported the Alliance as Patron of the SHA. The President of Ireland Mary McAleese who is Patron of the Huntington’s Disease Association Ireland and Sarah Winckless, Olympic Medallist, Double World Rowing Champion and Patron of the Scottish Huntington’s Association, along with Cath Stanley and Bill Crowder attended a reception in the Ormeau Baths Gallery Belfast on October 12th, 2009. Members of the SHA and HDI were also present. In a statement, Tony Hadley, Patron of the HDA said “I am really pleased that the Alliance between the four Huntington’s Disease Associations has formed. Hopefully by working together in partnership, awareness of this inherited neurological illness will be raised further at a national and international level. We need the media to promote the work of the HD Alliance as HD is a rare disease but has a huge impact on families as any child with a parent with HD has a 50 50 chance of inheriting the gene that will develop into this awful illness”. Shane Richie, Patron of the HDA also made a statement saying:-

“Huntington’s disease is a rare and devastating illness that strikes people down in the prime of life. I am delighted that the HD Alliance has been formed. This will create a stronger voice in supporting people living in the UK and Ireland. It is important that people are made aware just how HD affects the whole family and I hope that by forming the alliance, there will be greater opportunity to spread the word and educate people about Huntington’s disease” There are plans to launch the Alliance in Scotland early next year.

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Avon Tyrrell

Summer Camp 2009 The enthusiasm was as high as ever, and we had all set off on long journeys to the New Forest with mixed feelings about the weather! By the time the first leaders had arrived we knew the worst, many had travelled through a mixture of very wet and showery weather – and the rain just poured down as we waited under the very small porch to be let into the building. However, we were getting to know the new campers and being reunited with friends from previous years and by the time the first activity took place – after beds were made and clothes were changed – the rain had stopped! After our first meal it was swiftly onto the waiting coach to our annual pilgrimage to Splashdown. The youngsters (and most of the leaders) really love this activity and it certainly gets the weekend off to a lively and very clean start as most people seem to spend over an hour and a half in the water! Our coach journey back to Avon Tyrrell seemed to be much quicker on the way home and then most of the campers enjoyed a testing quiz ably hosted by Kevin while

some of the youngsters indulged in a game of Pictionary Mania with Helen and Ruth. Although the weather was not brilliant, we were very lucky, only having a brisk shower on Saturday lunchtime as everyone was going back to the house for lunch. Everyone managed to get a swim in the outdoor pool and nearly everyone got very wet in the

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lake, whether they were kayaking or raft building. One fortunate group managed to have a session in the Canadian canoes (but I think they did get wet from the rain as well)! All the groups did archery, high ropes and the climbing wall and the Adventure Challenge seems to be very popular even though everyone seems to get very muddy. In this activity you have to work together as a team and this was great fun. On Saturday evening we had a mixture of activities as some youngsters wanted to play rounder’s whilst others preferred drama. Many thanks to Paul (leader), and Shane (camper), for judging the excellent short plays. Fortunately we had enough enthusiastic leaders to be able to split and so I hope that everyone was kept happy. When there is a lull in proceedings, Avon Tyrrell has a pool table and table tennis where many happy hours are spent! During the evening Kevin and his team set up the dining room to act as our cinema and the film show commenced. Eventually tiredness overcomes us all and the sound of zzzzzzzing fills the corridor of our dormitory floor. On Sunday morning we have further activities before lunch, then there is tidying up and packing before the prize giving and home time. We award prizes to those youngsters in each group who have made a special effort, either in achieving when perhaps they were hesitant, or by helping other members of the

and a photograph of the campers. I will treasure this forever as it will be a great reminder of all the wonderful times I have been on camp with such fantastic youngsters and such a super team of volunteers.

group. One prize was awarded for the tidiest bed and surroundings – quite an achievement given the chaos which is the norm in most dormitories. As last year, there was a special presentation when Charlotte Gaylor (sister of Natalie) gave the HDA a cheque for £74.50 which had been collected by her school, Willow Primary. Well done to Charlotte and her classmates. As this will be my last year organising the Camp (but watch this space as I may be back as a volunteer leader), I was presented with a beautiful frame

So, as I made my way back home, exhausted and somewhat emotional I reflected on what had been another wonderful weekend. The weather was almost perfect (well we didn’t have to worry about the sun screen), and I didn’t spend the whole weekend with my head in the tumble dryer and we only had one slight casualty – a young man pulled a muscle whilst attempting the climbing wall, but he was fine. Our team of volunteers is fantastic and hopefully they are all looking forward to 2010 as well!

Thanks to BBC Children in need for making this weekend possible. Susan Young August 2009

Mepal Weekend The second Mepal activity weekend took place at the beginning of August. 24 of us, 16 children, 4 members of staff and 4 volunteers met up looking clean neat and without too many bags under our eyes. Our first activity, after food of course, was raft building. A very wet activity especially if your raft breaks up as soon as it hits the water, others did rather better and finished the activity with their raft intact. Day time on Saturday and Sunday found us sailing, kayaking, risking life and limb on the high ropes (some of us anyway), snorkelling, archery and doing target practise! On Saturday evening we headed off to Ely in a rather up market coach; our smaller one was stuck in traffic on the M25. Our destination being Strikes, the local ten pin bowling alley. We all had a great time, with some of the group showing us their more competitive side! It was generally agreed we should book this activity for next year. The weekend was tiring but great fun. At this point I must thank everyone that gave up their time to help make the weekend such a fun and positive experience for the children, without such a great team the weekend would not have been possible. Sue Hill The Association is pleased to announce that that we will be hosting the following weekends for children in 2010: Juvenile Huntington’s weekend 4th – 6th June 2010, Lake District – contact HO (0151 298 3298 or [email protected]) for booking form – key contact Helen Santini. Kids Camp – Avon Tyrell , New Forest, 6th – 8th August – Contact HO (0151 298 3298 or [email protected]) for booking form – key contact Cath Stanley Kids Camp – Kielder Water, Northumberland, 6th – 8th August – Contact HO (0151 298 3298 or [email protected]) for booking form – key contact Dee Boyd Kids Camp – Mepal, Cambridge, 30th July – 1st August - Contact HO (0151 298 3298 or [email protected]) for booking form - key contact Sue Hill

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Erroll Walsh Errol Walsh is a singer/songwriter from Northern Ireland although his music may be familiar to some of you since he spent 16 years based in London and played throughout the UK from 1988 – 2000. He fronted cult country-rock band ‘Tender Mercies’ (featuring legendary pedal steel player B.J. Cole) and won ‘Best Album’ 1997 at the BCMA Awards with a self penned CD “Coyotes” featuring a band of the same name comprised of well known London session musicians. He also won an award in Ireland in the same year for a solo project (“Waltzin’ in the Water”) recorded in Nashville. ‘Americana’ probably best describes Errol’s music. He grew up listening to a blend of folk, country, blues, gospel and a touch of rock’n’roll but with a distinctly American flavour. Since returning from London to his native Northern Ireland in 2001, Errol has been pretty quiet on the music front. He’d had enough of the professional music business and felt he needed to think about slowing down a bit and doing something a little less stressful with his life. So, he hooked up with an old friend and got involved in the ‘Lagan Boat Company’ in Belfast for seven years running Titanic boat tours for tourists on the River Lagan as well as starting up a maritime heritage charity. Yes folks… the Titanic was built in Belfast! … and as they proudly say in Belfast “She was alright when she left here!” Soon after arriving back in Belfast Errol met Susan, his Dublin born wife-to-be, and here’s where the course of his life changed… as happens to most people who come into contact with HD. Susan’s daughter Rachael is in the late stages of HD and Errol felt the best way he could contribute to raising awareness of Huntington’s disease and lobby for better services for Rachael and other HD families in N. Ireland was to sell up his share in the boat company and sign on as Development Officer with the Huntington’s Disease Association N. Ireland. As an awareness raising initiative, Errol has now decided to put his musical and songwriting talents to work for HDANI by creating a local media platform in the form of a new CD comprising 12 new original songs. The CD is called ‘No Borders’ signifying that when HD strikes, it is indiscriminate in recognising ‘No Borders’ in terms of age, gender, race or ethnicity. Proceeds of all sales go directly to Huntington’s Disease Association Northern Ireland. To maximise profits for Huntington’s disease Errol would like to sell as many copies as possible directly to buyers either online through www.errolwalsh.co.uk or By mail: (£10 inc. delivery) Please make cheques payable to Huntington’s Disease Association Northern Ireland and send along with your name and return address to: 72, Glen Rd, Glenariff, Ballymena, BT44 0RG To listen to a selection of tracks from the CD online go to www.myspace.com/errolwalsh

Branch News Introduction from Becky Davis

Many of the Branches and Support Groups have been busy again this year, and it was good to see so many people attend the Branch Day and the Regional Branch Day during the spring and summer. It is also great to see new people and groups forming, and this highlights the need that people have in local areas. It also shows just how caring you are. For those of you who have recently formed, there is a wealth of expertise and knowledge out there to tap into. We continue to develop the database and I must stress how important it is for everyone to let Head Office know of any changes you have to your details. Please complete the appropriate forms with your updates as necessary. This includes personnel and address changes. The Regional Branch Day was piloted in the North East in July, and it quickly became the Northern Branch Day as interest grew. The day was successful with around 25 people attending. This will hopefully be the beginning of something new and will spread across the country. Please keep sending dates of Branch and Support Group meetings and events so they can be added to the online calendar. I hope to see many of you during 2010, and hope it will be a happy and prosperous year. Thank you for all your support throughout this year. Seasons greetings. Becky Davis Branch and Events Co-ordinator

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Bristol Branch 2009 has been a very busy year for Bristol members kicking off in February with a charity concert staged by the “Keynsham Singers”, the proceeds of which, some £915, was donated to the HDA. Pam Payne a founder member of the Branch thanked the group for putting on the concert and gave an overview of HD to the assembled audience. In March the committee organised the Annual Barn Dance, which is always a great success and fun for all. This event gave all ages the opportunity to let their hair down and have a really good laugh. The Free Spirit Band and the “caller”, Jethro, made it easy for everyone to get up and have some fun, while only looking a bit silly! In awareness week Abigail Wright from South West DeNDRoN (Dementias & Neurodegenerative Diseases Research Network) was invited along to the branch monthly meeting to tell members about the research taking place in the Bristol area. Since her visit a number of branch members have signed up to the research programme. July was a busy month. Four of our braver members carried out a sponsored abseil over the Avon Gorge. They managed to raise almost £400 for the branch from families, friends and colleagues. Our street collection in Keynsham was an opportunity for less active but equally worthy fund raising. Abigail Wright was able to update branch members on the various DeNDRoN projects at the branch “Late Summer Get Together”, which was held on 12th September at Fry Club, Keynsham. The day was attended by 30 members and was an opportunity for branch members to get together with their committee and decide what they would like to do in the coming months. We were also pleased to welcome members of the South Wales branch with whom we hope to organise joint activities in the future. Our sponsored walk on Sunday 27th September was a circular route that took in Frenchay, UWE, Stoke Park and finally up the river from Snuff Mills where a refreshing drink was had by all then back to Frenchay Common and the finishing point at the White Lion where a pint and Sunday lunch was the order of the day. The total so far raised is almost £600. We are looking forward to our quiz at the end of October and an “An Evening to Remember” musical concert by “Encore” in November. So here we are nearing the end of 2009 and looking forward to an exciting and fun packed 2010.

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Chelmsford Branch Our membership continues to grow, despite us losing members Gerry & Patty who emigrated to Crete (No, it wasn’t to get away from Kevin’s nattering) They, rather bravely we thought, have decided to settle in warmer climes and we are a bit jealous about it. More seriously we lost the redoubtable Heather Pratten, our Treasurer / Secretary, who retired in May this year, her place being taken by Alan Marchant (Treasurer) & Kevin Roberts (Secretary). A big thanks go to Heather for all her hard work for the branch over many years. She will keep in touch with the branch, however, making sure that Alan & Kevin are keeping up to her high standards and not making too much of hash of it. We had a social drink at the branch local, “The Tulip” which went well. Unfortunately some members had to cancel at the last minute, due to illness. We had a surplus of food as a result of the cancellation. Our new member Kay suggested we give the food to the rest of the pub provided they made a donation. She, Debbie, Claire & Yvonne went round and made £20.00. We would like to thank the Tulip and its regulars for making us welcome, and they have also put a collecting box for HD by the bar. They also like our logo as it reminds them of a tulip, so they have bought some badges and are selling HD bears for us. Our stall at the Stock Donkey Derby did well this year. We made double last years takings. We also get a share of the gate money so our final figure will be much higher. Once again a big thank you to Brentwood Lions for inviting us to take part. This year we sold cakes baked by Heather & Maggie, with contributions by Kay & Kevin. Heather also made some jam & Alan donated his home grown tomatoes. All sold out! Maggie did an excellent job of selling our wares and thanks also goes to Peter, Alan, Lorna, Danny, William, John & Yvonne for assisting. We were near the refreshment tent, so while the others were packing up Yvonne helped by taking the empties back. She returned with a pleased smile as she had been rewarded with a free glass of wine by the staff there! We are also planning a quiz night for 21st November. We are also becoming quite gregarious and like to pop up at other branches meetings / events, especially if there is food or drink involved. Members have attended London’s Family Day, Oxford’s Gliding Day and Southend’s production of “Dustbowl Refugee”. The Lawns Nursing Home where we have our meetings always invite us to their functions. The branch members have attended an “Open Day”, and last month a Family day which raise money for charity. The Lawns spoil us as we have the use of the dining room for free, drink their tea & coffee and do not have to wash up after us! So once again a big thank you to the Matron and her staff for their help & support of the branch. We meet at the Lawns on the 1st Tuesday of each month between 7.00 & 9.00, with an (optional) drink at our local round the corner afterwards. It remains to say that, if you hadn’t guessed, we are a friendly, fun loving, caring & supportive branch with 10 to 20 regular attendees.

If you would like visit us the address is: The Lawns Springfield Hospital Lawns Lane Chelmsford

Please ring Kevin on 01268 570440 for more details.

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Colchester Branch We have great delight in reporting a very successful trip to Legoland for one of our families with three children. They were impressed with the “no queuing” system for the disabled. Our monthly family coffee gatherings are going from strength to strength with new family members calling in each month. We have now held four at Amber Lodge in Colchester and they provide plenty of tea and coffee. The cook also made some Biscuits for us. Eileen and Graham ran the October gathering and, as everyone wanted to talk and ask questions about HD, we stayed for an extra hour. Colchester excelled this year with twenty two adults and three children going to the Family Conference and AGM weekend at Telford. We hired a seventeen seat minibus for those without transport, and every one really enjoyed themselves. It always seems a very relaxing weekend and we hope to repeat in 2010. Graham

Cumbria Branch Awareness Week in June turned out to be quite busy. We were most fortunate that Jim Pollard supported our RCA, Theresa Westhead in holding a training day at Abbey Meadow, Barrowin-Furness, a local residential home where they care for four HD sufferers. Following the training we held a “meet & greet” for local HD families with five accepting their invitations. This gave us all a chance to chat and get to know each other. A second “meet” was held in August and a further one planned for November. Friday gave us a chance to show the Lake District off to Jim Pollard while we “delivered” him to the Calvert Trust at Keswick where he was attending the JHD Weekend. It was one of the rare good weather days this year. On the Sunday evening, for the second year, we held a cruise on the Steam Yacht Gondola on Coniston Water. This year we were extremely pleased to welcome 15 members of the Easington Branch who had travelled across the country to join us. Again the sun shone for us, while everyone feasted on the savoury and cake tea, and relaxed while admiring the stunning scenery. Committee members, Ann Currie and Robert Morely attended Hethersgill and Hayes Castle Vintage Car Rallies, earning some welcome funds, but just as important raising HD awareness. September heralded our Annual Bar-B-Q, once again hosted by Branch Secretary, Penny Clover, followed by our AGM. For a nice change we had a dry day this year and we very much appreciate Theresa Westhead and her family travelling so far north and joining us.

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Devon Branch The Devon Branch “Joy Club” held their first event on August 9th at Stockwell Manor, Silverton. As described on our website, the idea of the Joy Club (named after Joy the Fire Engine) is to keep our sponsors and helpers informed of progress with the Fight the Fire campaign. It also allows us, as a Branch, to hold a social event each year as a thank you to our sponsors and helpers. Sponsors and helpers were invited to bring along their friends - all helping to extend the public awareness of HD. Nearly 150 attended the event and enjoyed the jazz on a hot and sunny day. Probably the first and only sunny day in August ! Nearly £800 was raised on the day via kind donations and a sterling effort by Margaret Talling who organised a very amusing “Human Fruit Machine” fund raising session. Hopefully we will be able to make this an annual occasion. A huge thank you to Richard and Ann for hosting the event. Many thanks to committee members Roy & Lil Badcock and Joy Club members Les & Val Snow for helping with the organisation of this event.

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East Sussex Branch This summer it’s been the East Sussex contingent doing all the fund-raising thanks to our Treasurer Sandra Taylor’s wonderful friends from their local Aquafit class. The benefits are obviously not just improved mobility for the participants! Two of them (Margaret and Yvonne) make fabulous cards and having previously supported the local hospice, after meeting Sandra they decided that in future our Branch would receive the proceeds. The group were invited to have tables at the Armed Forces and Veterans Day Fair in Hastings at which they raised £123. Following this Margaret and Yvonne held a Strawberry Cream Tea on 14th July which was attended by the Mayor of Hastings, Councillor Maureen Charlesworth, and raised £150. Then on 4th August Chris held a Coffee Morning in Bexhill attended by the Mayor of Bexhill Councillor Bridget George, which raised a further £195 for our funds. With these events and collecting boxes at them a total of £485 was reached and this was pushed to £510 by a donation from a cake sale and a portion of the Raffle takings from the Friday Club. Our grateful thanks to Margaret, Yvonne, Chris, Sue and Marge for all their support and enthusiasm for our cause and especially to Sandra for having motivated them in the first place! On top of this “the girls” attend our meetings regularly and compete to provide us with home-baked goodies - it’s a far cry from the shop biscuits we used to have before they joined us. The Branch continues in good form and this injection of new, active members has certainly boosted our fund-raising options. We hold monthly meetings at the Cliffe Parish Hall, Cliffe High Street, Lewes and for directions, dates etc please contact Lindsay Sherwood (Secretary) on 01903 773370.” Lindsay Sherwood

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Hampshire Branch Ahoy there! We have had a busy few months and the highlight was a trip around the Isle of Wight on The Waverley a restored 1930’s paddle steamer. Over 40 members and friends came along both from ‘The Mainland’ and ‘The Island’ and we had the most beautiful weather giving us stunning views of the Island. We had our annual gliding trip in Awareness Week, thanks to the Oxfordshire branch and Shenington Image courtesy of http://www.flickr.com/ gliding club. All those who wanted to fly got airborne photos/andyc20050/1373988433/ either in gliders or in a small plane and we had a lovely BBQ afterwards. We were also joined by friends from the Chelmsford Branch: We have also enjoyed a day at Wisley gardens and a family afternoon at the Mill House Pub in Lyndhurst to which we invited the Dorset Branch. Our younger members have also been horse riding and are looking forward to a paintballing session in the near future. Five of them went on the HDA summer camp and enjoyed the activities and meeting up with old friends. Six of us went to the HDA conference in October and we are looking forward to meeting up with the Berkshire branch at our joint Families Day in November organised by Eve our RCA. We are also planning a trip to Osbourne House for their Victorian Christmas celebrations. We are a friendly bunch and enjoy getting together to support each other. We have regular branch meetings with pub socials and carer’s meetings in between. Check our website: www.hdahampshire.org. for more details or phone Anne on 01329 232373.

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London Branch Since our last report things have moved at a very fast pace. Ruth Sands, our hard working, dedicated, professional care adviser, together with Helen Santini and Alison Heavey arranged a London Day for both professionals & other interested parties, which was held in June. After a welcome/introduction by Ruth & Kester Putman (our chairman) Jimmy Pollard, our main speaker who came all the way from the U.S.A. took the floor. Jimmy is an expert on caring/dealing with H.D patients, and is the author of “Hurry Up & Wait” (which can be ordered from the HDA website) Jimmy gave a very illuminating & interesting talk, which involved some audience participation. In one game Kester nearly got his butt washed as part of a demonstration, and Helen Santini found that sitting at the back was no protection from being singled out, herself being blindfolded, spun round, & then asked to perform an everyday task to show how HD sufferers have to think much harder to perform such tasks. Kester’s Church also let us use their premises for our first quiz night (it helps that he is the Pastor!) This was a great success, raising £300. Not bad for our first attempt at fund raising. We had a number of guest speakers, including a visit from a Doctor at the NHNN - she came along to understand how to set up a support group for a different condition and wanted to see how we ran things. Additionally Dave Hale appears to be progressing with the idea of a Tube advert to raise awareness. Most of our meetings consist of simply sharing info and listening to one another. In short having a natter with a cup of tea & some biccies! We meet in Islington on the third Friday evening of each month. If you would like to know more you can contact Ruth Sands on 0208 446 8573 or E mail [email protected]. Regards from the London Branch

Manchester Support Group We meet every other Tuesday from 11.30 till 13.00, at the tables outside of the Balcony Bar, on the Upper Concourse in Piccadilly Station, Manchester. Debra Robinson, the R.C.A. for Greater Manchester comes to the meetings whenever she can. The group has been running for a couple of months now and is very much in the beginning stages, but it is for anyone affected by Huntington’s disease in any way and it is very informal. We believe it is very important that the people of Manchester have somewhere to go and people to talk to who understand, who don’t judge but support each other. So, if there is no support group near you and you can get to Piccadilly Station then please come along to these meetings. Everyone is very welcome.

Any questions please contact Ruth Birrell 07977 539271.

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Merseyside Branch As 2009 rapidly comes to its close. Merseyside branch looks back at several successful events. The teddy bear’s picnic in Delamere Forest was a huge success and the children had a great time collecting specimens from the nature trail. All enjoyed the feast afterwards. Thank you to Sarah and Paul Armstrong of Uranus Masonic Lodge they raised £500 for auction and raffles at the ladies night. 29 of us turned out for the fun run and over a thousand pounds has been sent to head office. It was a fun day, good weather and we had a fantastic lunch to finish it off. Chair of the branch kept up her brilliant record for her second year, last passed the post. 12 of us attended the AGM at Telford, it gets better every year. This year had a special message of hope. We have welcomed several new members to the group which continues to be very well attended and lively. All of the committee continue to be totally dedicated to the cause of H.D. They work hard to keep the branch interested and vibrant thank you one and all. More good times ahead on 17th October when we head off to Shelagh’s (sec) birthday bash. Happy big 50th birthday !!! She you certainly don’t look that old !!!!!!! The main event for all of us is meeting Tony Hadley at the black tie event at the Crowne Plaza in Liverpool on 30th Oct. 2009 Best Wishes, Mary Howlett Chair

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Nottingham Branch Once again the annual boat trip kick started summer activity. An afternoon on the river Trent, in glorious sunshine, was much appreciated by all present, especially when fresh cream cakes, courtesy of Catherine Tam Nursing Home, were handed out. The food theme continued into July when Kirstine and Chase McDaniel hosted a country house style tea party. Scorching weather for this ensured the cream teas were rapidly consumed before the sun could undo the generous offerings. The Chilwell school fete saw the inaugural use of the splendid Nottingham HDA banner, in the manner adopted by head office. It certainly put Notts Branch “on the map”. Many of the visitors came to the stall, asked questions and made donations. Sales of books, a tombola drum and other miscellaneous items, including a reptile tank, ensured a successful event. For the Stapleford Carnival we gave traditional fundraising a rest. Thanks to Katy Hewson and her artist friend, Notts branch hosted a face painting stall. This proved to be very popular, significantly raised the HD profile and brightened up the faces of many local children. Our work in raising awareness in Social Care Services and the NHS continues. Information Prescriptions contains a series of links and signposts to guide people to sources of information about their health and care. Notts Branch has been successful in getting HD represented in the launch of this new web site. Try visiting www.NottsInfoScript.co.uk and click on Huntington’s disease. The Family Conference has come and gone once more. Notts Branch was represented by 11 delegates. Once again a fantastic weekend full of hope and enjoyment. Unmissable!!!

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Oxfordshire Branch So, what have the Oxfordshire Branch been up to over during 2009, I hear you ask? Well, the year started with what now seems to be the annual outing to the pantomime held at the Oxfordshire Playhouse. Mike, our Chairman, arranges for our visit on the last performance of the production and books the front 3 rows of the theatre. His theory is that HD events sometimes become a bit of a Pantomime anyway – so you might as well make it official! The front row seats are ideal, for some, as we are close to the ‘action’ - but not ideal for others, especially when Widow Twanky takes a shine to you. That was in the 2008 performance, but it’s still giving me nightmares! This year’s performance was Aladdin, and once again an excellent turnout with Mike selling 60 tickets. After the show, most of us headed towards the local Pizza Hut, for a well earned slice or two of pizza. Next year it will be Jack and the Beanstalk. Both the Playhouse and the Pizza Hut nearby have been really excellent in catering for block bookings and giving us a very special price. The Branch tends to meet at Witney Community Hospital whenever we are having a ‘meeting’ and this normally takes place on the last Thursday of every other month. During the summer months we try and get ‘out and about’ a bit more and have more social events and fewer ‘meetings’. Skittles in a pub near Oxford has always been popular, as has dinghy sailing. Our meetings are very informal apart from the AGM in May, when a few minutes are put to one side to ratify the accounts and vote in Mike as Chairman as well as the other hardworking officers! The meetings give us a chance to catch up with each other, drink tea/ coffee and see how many different varieties of biscuits we can have in one night. Nowadays there are usually somewhere between a dozen and two dozen people at each meeting. This year we have had several guest speakers, all of whom have been very informative and opened up a few ‘doors’ to some of us. Becky Davis visited us from Head Office and we also have Olivier Bazin and Gill Siuda from DeNDRoN to talk to us, as well as June Stephen who was the initial chair of the newly-formed Oxfordshire Neurological Alliance. With summer fast approaching, Mike had already set wheels in motion with the branch to go gliding at the Shenington Gliding Club. This coincided with HD awareness week in June and is something we do every year. With the help of Mike’s fellow gliding club members, both Saturdays were a success with the Southampton Branch joining us once again for an evening of flying and a barbeque. Yvonne and Kevin Roberts also joined us from Essex with their well-travelled bear, Ting Ting. It was mooted by some of our members that a Barn Dance in July would be not only different but fun as well. They were right, it was fun, even if the great British weather did not let us down and it rained heavily all night. It was a joint effort again with the gliding club in their nice waterproof barn (ie hangar), with various strengths of chilli to give us the

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calories required for the dancing. Most of us took some persuading while others never left the floor. The highlight for me personally, was when Francis Heydon, one of our lovely genetics counsellors at the Churchill Hospital ‘persuaded’ me to take to the floor; I think she may regret it now. The leader of the group providing the music tried to talk us through all the steps prior to the music beginning. Within our small group, not only did we have a couple under the influence of some alcoholic beverages, but none us understood the steps and I suspect some were not giving the caller their full attention. At one point I thought the poor man’s accordion was going to catch fire at his frustration with us! Oh well, a good night was had by all. With autumn almost upon us, we have a few more branch meetings over the next few months, and a quiz night to look forward to. We are all probably revising our general knowledge for Mike’s questions; hint, does anyone know how heavy the moon is?! As for charity, we have received some very welcome donations, and hopefully by the time you have read this I will have completed the Cardiff Half Marathon (18 Oct 09). I completed the Reading Half earlier in March, raising just over £300. I‘ve taken the advice of the HD magazine and set up a Just Giving page, which is proven to be a success. My aim is not only to raise money but like us all, to raise awareness at the same time. Until then Keep Smiling, Tim.

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West Midlands Branch The next West Midland Branch Support Meeting will take place on Saturday 12th December at the a new venue - The Priory Rooms, 40 Bull Street, Birmingham City Centre, between 11am and 1pm. The branch organised a visit to the Coventry Museum of Transport on the 8th September. All who went had a good time and hopefully a bit of time off from worrying about HD. We saw cars old and new including the Thrust Land Speed record holder and a Back to the Future De Lauren. In the picture you see some of our members gathered around Postman Pats car. Jim Taylor Secretary West Midlands HDA Branch

Now that the ‘Dust’ has settled On the 23rd April 2009, Lee Pankhurst from Southend Branch began work on a script that was to become ‘Dustbowl Refugee’, a play about the life of legendary American folk hero, Woody Guthrie who died of HD. Dustbowl Refugee was intended to be a group project but it quickly snowballed into a much bigger production because the script, written by Lee, is so brilliant. It was inevitable that ‘Dustbowl’ would attract a lot of attention. Completed in a little over two months, the script was well received in local theatrical circles and soon attracted a cast of talented actors and – most crucially – the skill and vision of acclaimed theatrical director, Sallie Warrington.

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The Company, and an intrepid band of volunteer helpers led by David McDonagh, worked tirelessly on the production throughout the summer of 2009. The incredible effort and dedication of ‘The Dustbowlers’ (as they are now known!) came to fruition on a warm autumn evening in late September – just five months to the day since Lee had penned the opening line of the script. The play was performed in front of sell-out audiences at Shoebury Tech. College’s 200-seat theatre on two successive nights to overwhelmingly positive reaction from the enthusiastic audiences. Here are just a few of the messages received: ANN AND ROY, SALLIE & SARA’S MUM AND DAD Firstly, congratulations on a magnificent portrayal of that cruel disease, Huntington’s. We were very moved by the whole Production, and of course very proud of our daughters Sallie and Sara. Please will you put our name down for a DVD, it is a must have. Thank you, with best wishes ALISON HEAVEY, REGIONAL ADVISER HDA I just wanted to say what a wonderful play it was last night. The script was brilliant, pure genius, the acting superb and the whole organisation was something to be proud of. I really think that script could go far. I am so proud of you all for the hard work and dedication that brought the show to the public. There was never a better way of bringing awareness of HD to the public eye. Well done to you all!! HEATHER, FROM THE HDA CHELMSFORD BRANCH WOW!!! “THIS PLAY IS YOUR PLAY...THIS PLAY IS MY PLAY...FROM THE FRONT ROW.... THROUGH TO THE BACK ROW WITH ALL THE TEARS SHED...THE HEARTFELT SORROW...THIS PLAY WAS MADE FOR YOU AND ME. “ So glad I saw this and yes-you did make me cry, one of many. Please could I have a DVD? Also it should be shown at next year’s AGM for many to see. JULIE AND ANDY CREASEY Just a line to say what a great show. We were in tears. Be proud, you all did a great job. TERRY JONES The show was brilliant as I’m sure many people have told you. Hugely moving and a credit to all the cast. A masterpiece for raising awareness of the illness and the great work of the HDA. Please reserve me one of your Limited Edition DVD’s of your wonderful production of the Dustbowl Refugee. PAUL, ARGOSY TOYS Just wanted to tell you that I thought the play was fantastic last night. Really taught me a lot about Woody and HD. Keep up the good work. If you put it on again you will get a lot of repeat trade. Georgie at the Palace said you should book the Dixon Studio for a week! KEVIN ROBERTS Just to say “Dustbowl Refugee” was bloody brilliant!!!!!!!!!!! Next time we meet I will have to get you to autograph my programme as it may be worth something someday. KENNY HAVEY Brilliant show. Fascinating. Debbie and I really enjoyed it. Well done, mate. I felt very proud of you

Watch this space!

David (Southend Branch)

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Support Groups and Branches of the HDA Support Groups Cardiff Colchester At Risk Group Coventry & Warwick Gloucestershire Gwent High Wycombe Ipswich Kings Lynn London Milton Keynes North Kent Nottingham Carers Group

Orchard House (Herne Bay) Pontypool South Yorkshire St. Andrew’s Healthcare Swansea

Branches Berkshire Bristol Chelmsford & District Colchester & District Cornwall County Durham Cumbria Devon Dorset Easington & District Flintshire & District Hampshire Herts, Beds & Bucks Merseyside Newcastle North Staffordshire

North Yorkshire Norwich Nottinghamshire Oxfordshire Peterborough Plymouth Shropshire and Mid Wales Somerset South Staffordshire South Wales Southend Sussex Wakefield & District West Midlands West Surrey West Yorkshire

All contact details for support groups and branches are available from Head Office on Tel: 0151 298 3298 or [email protected]

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News from the Regional Care Advisory Team Where to begin! The team have been busy over the last few months. Sue Young, RCA for Kent and Sussex announced that she would be retiring in September. Sue has worked for the Association for many years and is respected by families, professionals and branch members alike. She will be remembered not only for her professional skills, but her Mary Poppins bag, and for those who have attended kids camp at Avon Tyrrell, for the ability to fill a Ford Fiesta with every imaginable need and eventuality for a summer camp! From the team, we will miss her organisational skills (we missed you organising the tea and coffee at the last team meeting) but …… not to worry team, Sue has passed on the Secret Santa hat and bag – so …… we just need a new volunteer for this year! Sue managed to arrange her holiday to ensure her infamous relaxation and exercise workshop could still take place at the AGM this year! I’m sure that you will all join me in wishing Sue well for a long, happy and healthy retirement. We are delighted to welcome Fiona Sturrock to the HDA, she will be the new RCA for Kent and Sussex. A few of the team have written a little insight as to what they have been doing over the last few months:

Again it has been a busy 6 months. I have expanded the area I cover to include South East London, I have been in touch with many people in this area but know there will be a lot of people I haven’t met yet, please do feel free to contact me if you are in the SE London area and would like to speak to an RCA. After the success of the Young People’s conference in Feb 09 I was asked to co-chair the EHDN Working group for

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young people, this is a way of working with people across Europe to make sure we are meeting the needs of this age group. We met with some young people at the family conference and are in the process of starting a ‘Huntington’s Disease Youth Association’. I have spoken about physiotherapy at both the residential course for professionals and the family weekend. I have very much enjoyed being involved in 2 summer camps and the JHD weekend. Ruth Sands RCA London

A hectic 6 months. Part of the challenges I have faced this period has been establishing links in the Shropshire area and introducing myself to new and existing families. A successful Caring for Carer’s Day was held in June for Carers living in the North-Wales area and feedback from this event was very positive. Di Lyes RCA North Wales & Shropshire I have been involved in a lot of new ventures since the last newsletter. Six months seems a long time, but here are a few things that have been crammed into that time. Securing the new Patrons was a personal achievement and so gratifying when it all fell into place. Mandy and Helen Santini have to take some credit as it wouldn’t have happened without them. It was great to introduce Tony Hadley and Shane Richie as Patrons of the HDA at the launch of the Huntington’s Alliance in June, during awareness week. As it happens, they are old friends and they enjoyed catching up with each other too. We pulled a few RCA’s together to look at our training materials and update it all. We wanted to modernise and make the training packages more professional and corporate as we are charging professionals for our services. The training covers a whole range of HD related topics and can be tailored to meet the needs of particular organisations. This work is ongoing. I am representing the Association at the Care and Support Alliance which is lobbying the government on issues in the Green Paper - Shaping the Future of Care. One of the big issues here is to stop the idea that Attendance Allowance will be ceased

and the money saved will be put into service provision. The government wants to develop a national care service, similar to the NHS but for social care. The Green Paper is in circulation as a consultation exercise. Following a team meeting in September, some of us visited the Trafalgar Plinth to watch Kay Crewden perform a mini play on the Antony Gormley structure. It was filmed and televised live on SKY. We raised awareness of HD on terra firma and gave balloons to the kids. We had a successful family conference in October and some commented that it was the best yet. We provided training to the staff at the Park Inn prior to the event and I think everyone had a good weekend. The turn out was excellent. That is a snippet of what has been going on. Bill Crowder Deputy Head of Care Services

The years seem to get busier and busier with helping with the Clinics, visiting families, training, Branch Meetings and Events, etc. I have been approached by the Oxfordshire area regarding a HD Care Pathway to look at improving the services for those affected with HD and support for the families. The next Family Day for all of my counties is currently being looked at for 2011. The HD Clinics in Gloucestershire and Bristol are getting busier and they are getting patients involved in the Euro-HD Projects, which is very exciting. Still so much more to do…… Carol Dutton RCA Oxfordshire, Avon & Gloucestershire

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Once again a very busy and exciting six months. The first of the Regional Branch meetings was held in July in Newcastle, and branch members from Yorkshire, Cumbria, Merseyside and from throughout my North East region made it a successful and productive morning; A big thank you to the Newcastle Branch for hosting the event. This was followed by our annual family event, which included an uplifting talk by one of the branch members about her experience of being included in a drug trial; Heather Skirton gave a thought provoking presentation on Talking to Children about HD and the difficulties carers face on a day to day basis; there was also a financial surgery and a range of alternative therapies, the feedback was extremely positive. I continue to meet new families and extend my contacts within Social Services and Health working together to make sure that families receive the appropriate support plus providing HD information and advice for professionals. As always the three branches have been busy fund raising, organising activities and promoting HD at every opportunity, we are still keen to encourage new members so come along and see what we do – we would love to meet you. Dee Boyd RCA Northumberland, Tyneside, Wearside, Co. Durham and Teeside

Where does the time go? It has been a busy 6 months with the usual paper work, meetings and family visits. I am working hard towards the ‘families day’ in Reading on 14th November and have my fingers crossed that all goes smoothly. The Berkshire branch very much would like to see more people join, so please do get in touch. As always the Hampshire branch have been busy with the usual summer activities and had a trip on the Waverly paddle steamer which was greatly enjoyed by everyone. I am

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looking forward to continuing in my role, supporting, advising and listening. So if you need to get in touch please do. Eve Payler RCA Hampshire and Berkshire.

At the end of April, I took over Pam’s role in Herts, Beds and Bucks when she retired from the Association. I now combine this role part time, while still covering Juvenile Huntington’s Disease. It has been really great getting to know new families and working with a new group of professionals in this area, and it has been keeping me busy! We are hoping to hold a family day in this area next year, so watch this space! I am still the HDA’s Care Adviser for JHD part time and I am more than happy to be contacted by anyone who has queries about JHD. In June we held our JHD family weekend, as we now do every year, and it was great to see everyone back at the Calvert Trust again. We always love welcoming new people to the weekend, so please do let me know if you want to know more about the weekend. Helen Santini Roald Dahl Care Adviser – JHD & RCA – Herts, Beds and Bucks Life is never dull in the West Midlands! During the last 6 months I have had several phone calls on issues such as PGD, research, getting the best chair and re-housing issues. The Specialist HD Clinic in Birmingham helps many people in the area, but for those of you who do not get this service I am available to answer your enquiries. Members of the West Midlands Branch and the Coventry & Warwick Support Group share many problems with each other at their meetings, but usually manage to have a good laugh too! Jackie Gallop RCA Birmingham and the West Midlands

The last 6 months have been eventful. A new clinical nurse specialist for Huntington’s disease, working with Professor Rosser in the HD Management Clinic at University Hospital of Wales in Cardiff, is now in post. A new clinical nurse specialist working within the Complex Care Team in the Gwent area (now the Aneurin Bevan Health Board) is also now in post and a specialist Occupational Therapist has been appointed. It is envisaged that specialist posts for a Speech and Language Therapist and a Physiotherapist will soon be filled. This is all very good news for families affected by Huntington’s disease in South Wales and I hope that we can all work together effectively to improve and extend services. The new NHS Wales infrastructure has been operational since 1st October. This means that the previous 22 Local Health Boards and the 7 Health Trusts in Wales have now been replaced by 7 new Health Boards. The aim is to remove the market culture of “commissioners” and “providers” and concentrate more on the needs of service users. Although we can expect the usual teething problems, I am feeling optimistic. For information about your new Health Board you can phone NHS Direct Wales 0845 4647 or google new health boards for NHS Wales. The South Wales Branch continue to provide much appreciated support and have agreed to finance more events and meetings. With their support, I intend to run more Family Information Days, and provide opportunities for families to meet the new specialist professionals. I continue to provide information and support to professionals and families and have been very busy delivering information sessions in the past few months.

The last six months have been full of activity and I continue to offer advice and support to anyone affected by HD. Dr Ralph Gregory , Consultant Neurologist, has just commenced his new post in Dorset following the retirement

of Dr C. Ellis. The Disability Action service in East Dorset, now has a Specialist Neurology Nurse. This is a new post. Her name is Wendy Bailey and those who attend the HD clinic at Poole in Dorset, will see us both there. We undertake some joint visits where applicable and together with the other members of the team, work hard to provide seamless care to benefit those affected. The Dorset Neurological Network, of which I am currently a member, is developing into a User Group and a lady from one of our families in Wareham has agreed to represent the Dorset HD Community there. This group will feed back to the across Dorset Implementation Team for the Framework for Long Term Conditions , having a direct impact on the provision of services. Dorset and Wiltshire have expressed an active ongoing interest in Euro HD and local people will no longer have to travel outside the county if they wish to take part in research. A Dendron Research Nurse will attend the clinic in Dorset and a similar plan is being investigated in Swindon. The professionals who have formed the HD Forum in Swindon, Wiltshire of which I am a member, have put together a bid to develop services for those with HD in the area, to include a HD clinic. They have invested a lot of time, energy and expertise in putting forward their case. Watch this space! Ann Pathmanaban RCA Dorset & Wiltshire

Jacqueline Peacock RCA South Wales and Herefordshire

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It has been another busy and varied period here in Yorkshire, I am continuing to give teaching sessions to a wide variety of people and enthusiastic groups who what to learn more about HD. My main highlight was talking to thousands of listeners on the Graham Liver radio show back in July talking about HD, that really seem to have opened up a lot of enquiries. We are hoping by the end of this year to open a multi disciplinary clinic in the Hull area. Our Wakefield and District branch is going from strength to strength well done to all. In August of 2010 Dee and I are starting a Northern summer camp for 8-16 year olds in Kielder, any one interested please contact Dee or me. It was so nice to see so many old friends once again at the AGM Telford. Peter Burns RCA North/North East/West Yorkshire Hi Everyone I have worked with the HDA for two years now and cannot believe how quickly the time has passed. The Devon and Cornwall area remains busy both in terms of new referrals and the need for support and the progress that the area is making in establishing support groups and multi disciplinary clinics. I have attended the carers meetings held at Kenwyn Nursing Home in Truro to date, and feel that things will progress very well for the county, with the firm backing of the members within the group. It is an ideal opportunity to invite some of the professionals along; especially those whom the carers feel are doing a good job for their loved ones.

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Things are looking positive for Cornwall Branches’ Family Day in October 2010, to help to celebrate their 21st Birthday.

We are all really sorry to have lost Andrea Clark from Millaton Court and wish her all the very best for her new job. The Peninsula Clinic will remain at Millaton Court, although all referrals will have to be made to Jo Coombs, the Current Unit Manager, C/O Millaton Court. I attend a carer’s group for the Plymouth Carers once a month, this is well attended and allows the carers to air their views and have a break for a couple of hours. I would like to look into starting the same kind of group for the East of the county, either for carers or for those at risk of or symptomatic of HD, if anyone is interested in helping me to set this up then I would be grateful if you could contact me. With Kind Regards Paula Haynes-Parry RCA Devon & Cornwall During the last six months I have been kept very busy as have my colleagues all around the country. I have had an amazing amount of referrals over the last few months whether it be via the specialist HD Clinics, local professionals or just because people with a new diagnosis or carers are checking our website to find out more information. Whatever the reason it’s great to be able offer support and advice to as many families and professionals as possible in my area. I am trying to offer as many training sessions, family visits and care home support visits as I can, and also be around to pick up your calls and emails. I am continuing to link into the specialist HD Clinics in London, which provides Surrey families with a familiar face when they visit and also a link with the community for the Clinic, it also helps to offer local professionals an expert link for guidance and support. I have just returned from the AGM and conference in Telford. I hope that you all enjoyed it as much as I did. It was fantastic to meet so many of you from around the country and see so many families relaxed

and having a great time. I think most people went away feeling positive for the future. I am very excited to be organising a Family Day next year with help from Lottery funding at Sandown Park Race Course, on 8th May 2010. Surrey, I hear haven’t had a Family Day for some years, so that is something to look forward to and I am looking forward to seeing as many of you as we can squeeze in on the day – watch out for more details soon. I look forward to next years challenges and meeting many more new people. This year my path has crossed with many families and I find their strength, courage and commitment inspirational. On a personal note I would also like to thank you all for your kindness and support on my return to work. Thanks. Mandy Ledbury RCA SW London and Surrey

In the last six months some Somerset families have gained support from the meetings held at the Victoria Park centre in Bridgwater. A big thank you to Ric Bailey for all his work and commitment in organising and attending these meetings. The current plan is to organise an informal family day in Spring 2010. The day will offer the opportunity for families in Somerset to get together socially, find out more about support and help and to be updated on the ongoing research. Together with my colleague Mandy Ledbury I recently had input at the Annual General Conference in Telford on Smoking Cessation at the AGM. Smoking Cessation is an interest of mine so please feel free to get in touch for advice and support if you are thinking of quitting smoking. Neil Glendinning continues to be a great driving force in Somerset and the service offered to families, despite the challenges he is facing with his own health, aided as always by his wife Gill. Raising Awareness about Huntington’s disease and the help available continues and many families are

making great efforts in this process in Somerset. Thank you to them. Shirley Bignell RCA Somerset The big event for me this year was adding Lincolnshire to my area and increasing my hours to full time. From topto-toe my area is now over 200 miles!! It has been lovely meeting new people and working with others that I had only met before in the Cambridge clinic. So far this year I have had stands at a number of awareness events attended by health and social care professionals, people always seem interested in what we are doing and the hope is that they will remember the information should the need arise. I attend the HD clinic in Cambridge which is held each Wednesday morning. As well as seeing the Neurologist and maybe the Psychiatrist , a number of clients are also involved in research. In the summer the second Mepal activity weekend took place, this year there were 16 children, 4 members of staff and 4 volunteers. Sue Hill East Anglia and Lincolnshire. One of the sessions at the recent World Congress, where a young lady was talking about the Canadian Youth Association, caused me to reflect on the changes that have taken place within the HD community since I started in post. The world has become a much smaller place since the wide spread access to the internet, communication has been made easier from Country to Country. Knowledge is better and more easily accessible. Yet for many families affected by HD the challenges remain very much the same, a lack of understanding of the illness, lack of knowledge and inappropriate care, and so for our HDA team, we have to continue to embrace that challenge and aim to improve knowledge, understanding and care and therefore improve the quality of life for individuals affected by HD, and their families. Cath Stanley. Head of Care Services. Huntington’s Disease Association

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Website Update Deadlines 2009 31st Jan, 31st Mar, 31st May, 31st July, 30th Sept, 30th Nov.

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Staff Contact Details Head Office & Branch Administration: Name

Area

Telephone

E-mail

Karen Crowder

Senior Administration Officer – Head Office Administration Officer – Head Office Branch and Events Co-ordinator

0151 298 3298 0151 298 3298 01743 369107

[email protected] / [email protected] [email protected] [email protected]

020 8597 5572 0151 489 3816 020 8868 8329 020 8644 5897 0151 298 3298

[email protected] [email protected] [email protected] [email protected] [email protected]

Mark Ford Becky Davis

Fundraising: Ayla Besser Jill Shan Carolyn McGlamry Jocelyn Atkinson Sharon Bakewell

Head of Fund Raising Fund Raising-Trusts & Companies Fundraising-Local Authorities Fundraising-PCT’s & Small Trusts Financial Accountant

Regional Care Advisory Service: Cath Stanley Bill Crowder

Head of Care Services England & Wales Deputy Head of Care Services

0151 482 1199 01704 875496

[email protected] [email protected]

Regional Care Advisory Service: Shirley Bignell Dee Boyd Peter Burns Carol Dutton Jackie Gallop Paula Haynes-Parry Alison Heavey Sue Hill Helen James

Somerset North East North & East Yorks Oxfordshire, Avon & Gloucestershire Birmingham and West Midlands Devon & Cornwall Essex East Anglia and Lincolnshire Northants, Derby, Staffordshire, Leicester and Nottingham Mandy Ledbury Surrey & South West London Diane Lyes North Wales & Shropshire Ann Pathmanaban Dorset & Wiltshire Eve Payler Hampshire & Berkshire Jacqueline Peacock South Wales & Herefordshire Debra Robinson Greater Manchester & Cheshire Ruth Sands London Helen Santini Herts, Beds& Bucks & Juvenile HD Care Adviser, England & Wales. Roald Dahl Foundation Fiona Sturrock Kent & Sussex Theresa Westhead RCA, Lancs, Cumbria & Merseyside

01460 57079 0191 373 1709 0191 257 3289 01451 861575 01527 576044 01822 835974 01255 823088 01353 648437

[email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected]

01332 518988 01483 285231 01691 671722 01425 627960 02380 61 2218 01873 831931 0161 303 2966 0208 446 8573

[email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected]

01279 507656 01580 212276 01942 864645

[email protected] TBC [email protected]

Huntington’s Disease Association

Neurosupport Centre, Norton Street, Liverpool L3 8LR Tel: 0151 298 3298 Fax: 0151 298 9440 E-mail: [email protected] Web: www.hda.org.uk

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Tributes My dad, Bernard Samuel Brenner, 20-11-26 to 09-09-09 Dad hated the awful disease, Huntington’s, that robbed him of his beloved wife Beryl in 1997. He asked that instead of flowers, could donations be made to the HDA, and we were able to send a donation on behalf of some of the mourners at his funeral, and of our wonderful friends and relations who couldn’t attend the funeral, but kindly sent donations anyway, He left four children, Clare, Neil, Karen and Alison, and five grandchildren, David, Paul, Steven, Mark and Adrian. He is sadly missed. Our world is so much lonelier and much more frightening without him. Some words from a family friend, Mary Evdemon: Bernard He wasn’t my relative uncle or Dad He was this man who lived over the road He was always there when times were bad And I was on ‘overload’.

He was a true gentleman of the old school His charm was ‘old world’ and unique He looked on benignly as I played the fool He cushioned me when life was bleak I owe him a debt for showing me how To live life in grace and with humanity His influence was such, I know how To make allowances for others frailty

A lasting legacy you have left behind Of decency and kindness in life Spread out on a cloud, looking down on mankind As we battle with Earth and it’s strife Joined at last once more in perfect love With Beryl your wife and help through the years Think of us as you look down from above As we celebrate you through the veil of our tears Some lovely words from his daughter Karen: Missing You

Bernard my love, you finally did it. You finished the job, dotted the i’s, crossed the t’s, and closed the door quietly behind you.

Despite your discomfort and the imposition of treatment which caused the loss of your independence, You maintained your equilibrium, your optimism, your humour and your enormous capacity to love. I thank you for the last two weeks you allowed me to spend with you The hours we sat together, talking, reading, catching up Telling jokes, reminiscing or just holding hands in silence, Happy with the tactile affirmation of being.

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Thank you for being able to discuss the details of what you wanted us to do, Thank you for the giggles, the fun, the hugs and the cuddles.

Even amongst the most intrusive of procedures, you were able to express your heartfelt gratitude to those who were caring for you And, believe me, they appreciated you. You treated all of us with honour, you stayed companionable, kind and considerate Open and even-handed to the last I am convinced that you timed your death deliberately. You waited for all of us, acknowledged each of us, and left us peacefully, You just … slipped away. We treasure your memory, We honour your generosity, We applaud your strength, We admire your fortitude, We love you and We miss you, We miss you, We miss you.

John Ellison 05.03.55 – 17.09.09 John was diagnosed with HD in 1995. He had not known what his mother had died of so it came as a complete shock. He was devastated that he was not going to be able to watch our only son Matthew grow up into adulthood. John and I knew each other for 36 years, and were married for 31. Although the last 14 years were tinged with some sadness, my memories of our time together bring me comfort. John had a love of life and he brought me joy and happiness. He was a considerate, loving man with a great sense of humour and he was a great father to Matthew – now aged 21. John gave up working in 1996 but was still able to enjoy his life. We had some memorable holidays during this time to Florida, Israel, Egypt, Dominican Republic, Spain, Portugal, Rhodes and Austria and he also enjoyed walking, cycling, watching golf and football. I gave up working in 2005 to look after John full time at home as his mobility had deteriorated and he had to be fed via a PEG tube. John always tried his best to co-operate to make life easier for those around him and I am so proud of the way he fought his battle with HD. John died unexpectedly of Bronchopneumonia on 17 September 2009. Matthew and I were with John when he passed away at home and it gives us immense comfort that he did not suffer. The house is very quiet now without John, because although he couldn’t speak, he made his presence known and the Sports Channel was on all day most days. I shall cherish our memories forever. Norma Ellison

The Huntington’s Disease Association would like to sincerely thank all of our families and friends for their kind donations sent in memory of their loved ones.

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Malcolm Bull

2nd November 1937 – 12th January 2008 To a loving father Dad you’re always near, So missed, so loved So very dear. Rest in peace dad, You suffered long enough. All our love, Emma, Pete and Jade xxx

Clive Anthony Smith Born 23rd April 1960 – died 16th February 2009 Age:48 Mother Marge Smith also had Huntington’s disease and died 16th December 1976, age 54 What we would give if we could say, Hello Clive in the same old way. To hear your voice and see you smile, To sit and chat for just a while.

Dorothy Brent 06.10.1925 to 05.04.2009

A beloved wife, mother, grandmother, sister, aunty and friend, who devoted her life to the care of her husband, Bill (deceased) and most dearly loved sons, Paul, John (deceased) and Gerald. Will be greatly missed and always remembered with love and affection. God bless you Mum. Reunited with Dad and John. Paul and Gerald, Plymouth

In memory tribute to ‘Mum’, from Pauline Tams Freda Jones was Ernest’s (my dad’s) carer for many years, she was a devoted wife, mum, grandma and nana. All the family loved her very much and she is now the brightest star in the sky, looking over us and dancing with the angels!

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Advertisement

Forthcoming Events Young People’s Conference, 12pm Saturday 27th February to 1pm Sunday 28th February 2010 at the Telford Hotel & Golf Resort, Great Hay Drive, Sutton Heights, Telford , TF7 4DT. The conference costs £45. Topics to be covered include testing, having children, relationships, physiotherapy, getting involved in research or fundraising. Contact HO [email protected] or 0151 298 3298 for details Family and Professionals Day 22nd October 2010 held at the Headland Hotel, Newquay, Cornwall. TR7 1ES (01637) 872211 Contact Paula HaynesParry 01822 835974 paula_haynes [email protected] Neuro training day in the North East Jan/Feb 2010 contact Dee Boyd 0191 373 1709 or [email protected] Juvenile Huntington’s weekend 4th – 6th June 2010, Lake District contact HO (0151 298 3298 or [email protected]) for booking form – key contact Helen Santini. Kids Camp – Avon Tyrell, New Forest, 6th – 8th August 2010 Contact HO (0151 298 3298 or [email protected]) for booking form – key contact Cath Stanley Kids Camp – Kielder Water, Northumberland, 6th – 8th August 2010 Contact HO (0151 298 3298 or [email protected]) for booking form – key contact Dee Boyd Kids Camp – Mepal, Cambridge, 30th July – 1st August 2010 Contact HO (0151 298 3298 or [email protected]) for booking form key contact Sue Hill Branch Day – 20th/21st March 2010 Venue and details TBC – await further announcement Interactive Residential HD Course for professionals – 8th – 10th December 2009. Liverpool – contact HO (0151 298 3298 or [email protected]) for booking form Understanding Huntington’s Disease – multi-disciplinary day 16th June 2010 – Central London – details TBC Awareness week 14th – 20th June 2010 Family day (sponsored by Lottery Funding) To be held May 8th 2010 at Sandown Park Race Course Contact Mandy Ledbury 01483 285231 [email protected] for further details

Would you prefer your newsletter on CD? It has come to our attention that some people would like to have an audio CD to accompany their newsletter so they can listen to the articles as well as (or instead of) reading them. We are now setting up a trial run of the newsletter by CD. If you would like to receive a trial copy please contact: Ruth Sands Helen Santini Tel: 020 8446 8573 Tel: 01279 507656 or Email: [email protected] Email: [email protected]

If you would prefer to receive an electronic copy of the newsletter so that you can view it on your computer screen, please contact Becky Davis on 01743 369107 or [email protected]. You may also download a copy of this newsletter by visiting the home page of our HDA website; www.hda.org.uk

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HD Service for Men and Women The Harper Huntington’s Disease Service The Harper Huntington’s Disease Service at St Andrew’s Healthcare, Northampton, have specialist units offering individualised assessment, treatment and care for men and women (aged 24+), including those detained under the Mental Health Act (1983). The units are bright, spacious and attractive, situated on the ground floor with direct access to their own safe garden and beyond that, the impressive grounds of St Andrew’s. Core values for the service focus on: • Person-centred care • Management of challenging behaviour • Enhancing quality of life • Safe environment for those at risk of harm • Active support for family members The second edition of the Huntington’s Disease Association Standards of Care have been developed in association with St Andrew’s Healthcare. For the full document see www.hda.org.uk/download/ fact-sheets/HD-Standards-Of-Care.pdf

St Andrew’s Healthcare, Billing Road, Northampton NN1 5DG Registered Charity No. 1104951

The Multi-Disciplinary Team In addition to skilled nurses, we have experienced clinicians with particular expertise in the areas of: • physiotherapy • speech and language therapy • occupational therapy • social work • neuropsychology • psychiatry • dietetics Our team offer care and support and are responsive to the changing needs of the individual. Individually Determined Pathway of Care This includes regular comprehensive assessments detailing physical, neuropsychiatric problems and the management of risk. We have a newly refurbished male only unit to compliment the existing Harper unit. Individualised Treatment and Care Plans These focus on the maintenance of comfort, dignity and functional skills. Out-patient assessment and treatment advice can be provided upon request. In some circumstances day care can be provided for people residing in Northamptonshire or within a reasonable travelling distance.

Where People Matter If you are interested in learning more about our service, wish to visit or make a clinical referral, please contact the Registered Manager

on 01604 616095 or email [email protected] www.stah.org

A charity leading innovation in mental health

Please note:

The copy date for articles for the next issues of the Newsletter is

9th April 2010 and 9th October 2010

This newsletter is for our members we are always pleased to receive and share any items of interest you might wish to display within its pages. We appreciate those members who send items in and would encourage others to do the same. With many thanks for your continued support. Editorial Panel: Cath Stanley, Bill Crowder and Becky Davis.

Huntington’s Disease Association

Huntington’s

Huntington’s Disease Association Neurosupport Centre Norton Street Liverpool L3 8LR Tel: 0151 298 3298 Fax: 0151 298 9440 E-mail: [email protected] Web: www.hda.org.uk Registered Charity No. 296453 Produced by: www.allsortsdesignandprint.co.uk

Patron: Th