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Newsletter Summer 2014

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Newsletter Summer 2014 Huntington’s Disease Association Newsletter June 2014 Contents HDA Newsletter June 2014 Page Message From The Chair 3 News from the Chief Executive 4 June 2014 Newsletter Information 5 HD Buzz: Sleep, cilia and HD 6 HD Buzz: Does high-dose creatine “slow the onset” of Huntington’s Disease? 8 Young Adults Weekend 2014 10 Coping with Huntington’s DiseaseW elcome to 10 Yes or No? 11 Fundraising News the 69th 12 Branch News issue 23 Branches and Support groups of the HDA 24 News from the RCA Team of the 29 Staff Contact Details Newsletter 34 Tributes 35 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: Panel: Sally Phoenix,Cath Stanley, Cath Stanley, Bill Brenda Crowder Stevenson, and Eleni Becky Zacharius Davis 2 Message from the Chair In March we were delighted to be Association passed away. Mary Howlett, a long-standing presented with the Judges Discretionary member and Chair of the Merseyside Branch and Trustee of Award by the Association of Medical the Association for many years, will be sadly missed. Research Charities (AMRC) at a ceremony in London, which Cath When I became Chair, Mary was so very welcoming and Stanley, Chief Executive, and Ruth supportive that it made my transition into the role very easy. Abuzaid, Deputy Head of Care With her experience within the NHS and the HDA she was a Services, attended. true asset on the Executive Council. The Award was in recognition In November 2012 when I held a review session with the of our HDBuzz website, which Trustees, Mary’s knowledge, enthusiasm and generosity as you know explains the latest of spirit helped with decisions we needed to make. I will Huntington’s disease research in personally miss Mary, in particular at our AGM’s, where we plain, understandable language. In shared many a tipple and she was known to order pizza in addition to research articles, the website the wee small hours. Mary was a true star and we will miss also publishes information to put sensationalised ‘miracle her very much. cures’ into a realistic context. On behalf of the Executive Council I would like to thank Cath One of the comments made by the Judges’ was: “The HDBuzz and our wonderful group of employees for all their hard work website is an excellent idea; the research information is and dedication to the Association. shared so comprehensively. Many of the larger funders could Finally, just an early reminder to say the AGM will be held learn from this!” again at the Holiday Inn, Telford in October and Robin and I am sure you will agree that this recognition is outstanding I very much look forward to meeting as many of you as and I would like to thank the whole team on your behalf possible. for such outstanding work. This also would not have been Heather Thomas possible without the management of the site by Dr Ed Wild, Chair of the Huntington’s Disease Association Clinical Lecturer in Neurology at UCL Institute of Neurology, Queen Square, London, and Dr Jeff Carroll, who is a scientist studying HD as a post-doctoral fellow in the labs in Marcy Macdonald at Massachusetts General Hospital/Harvard Medical School, both of which are the Editors in Chief of HDBuzz. By the time you are reading this the marriage of Matt Ellison, founder of HYDO and an HDA Trustee, and Marianna KlimontowiczI will have become husband and wife. I ask you to join me in wishing them much happiness, fun and joy in their future life together. In February a very special baby was born in South Wales called Jack. He was the result of many months of his parents visiting London to ensure he was born free of HD. This is evidence that research is moving on at some pace and that people with HD are now able to have a family knowing they are not passing on the gene. Auntie Heather & Uncle Robin are looking forward to watching Jack grow up into a fine young man. Lots of events have been going on across the country with regard to fundraising, and without the effort of all of the services we offer to all our families, carers and friends, we would not be as successful and internationally recognised as the HDA is today. It is with great sadness that I have to inform you that earlier this year a wonderful advocate of the Huntington’s Disease 3 News from the Chief Executive How quickly the time flies by. It is lovely We are looking forward to holding a host of children’s events to be typing this early evening and in the summer with three children’s activities camps, the looking outside to see light nights, JHD weekend, a teenage camp and an activity/information daffodils and signs that spring is day. We are grateful for the support we get from a variety on its way after a dark and wet of sponsors to make it possible to run these events and winter. profoundly grateful to our staff and volunteers who make them possible. The HDA continues to grow and develop and is still working on some I am also thrilled to share new projects and developments. with you that the HDA Following on from the fantastic input we won the AMRC Judges had from families at the AGM, we have spent some time Discretionary Award for looking at what our core purpose and key impact should be. Communicating Science. Improving quality of life for people with HD and their families This was not least thanks describes every aspect of the work we do and remains our to Dr Ed Wild for giving of core purpose. The themes that emerged in terms of how his time so freely at HD we achieve that were improving quality of care, increasing events to communicate knowledge and understanding of HD, reducing risk, raising science in a way we awareness, empowering individuals, carers, professionals can all understand, and and volunteers and reducing isolation. All of the work that to Ed and Jeff for their every staff member of the Association carries out fits into inspirational HDBuzz these categories and we strive to improve quality of life. which is streamed to our website. We are continuing to work with some specialist care home providers to develop some standards of care for people with I personally would like to thank our senior management team; HD. My thanks to those people who offered to help with Bill Crowder, Ayla Besser, Karen Crowder and Ruth Abuzaid, this project; I will be contacting you soon with information we have covered a lot of extra work over the last few months for comments… you have been warned! Likewise the project and they are extremely dedicated and committed. with UK Huntington’s Disease Network and DENDRON is bubbling along, and thanks for those who offered to help Finally, I know there will be many mentions of this in the with this, I will be in touch soon. newsletter but I would like to recognise the enormous loss of Mary Howlett, Merseyside Branch Chair, and former Trustee The work with the APPG into looking at care needs across of the Association. Mary was an incredible lady; wise and the country has not progressed quickly but we are hoping to reflective, loved with a big heart, and could not do enough appoint an intern to drive this forward. for anyone. On the other side, fun loving and the life and soul of any event. I have many memories of Mary, but, in the We are really looking forward to Awareness Week this year. early hours of the morning at the AGM, bursting into song Our focus will be on mental illness and we are producing a and leading the singing will always be my favourite. dedicated booklet to send out to mental health teams and in-patient facilities. We are very grateful to Dr Hugh Richards The HDA remains dedicated and committed to supporting (Consultant Neuropsychiatrist), Steve Hale (Solicitor) and families affected by HD. It is you who are our true inspiration. Doug Feery (Barrister) for giving freely of their time to develop this. We will also be focussing on providing training Cath Stanley for mental health services and putting information about this Chief Executive important topic on our website. Huntington’s Disease Association We are very excited that Jimmy Pollard is coming to speak at the AGM this year and we are making good use of him as he will be speaking at three events prior to the AGM; London, Chester and Burnley. More information can be found later in the newsletter. 4 June 2014 Newsletter Information Inside this edition of our bi-annual newsletter, you will find the following documents: • AGM & Family Conference Booking Form • Grand Prize Draw raffle tickets • Donation Form with return envelope • Factsheet, Publication and Fundraising Goods Order Form • Christmas Card order form The above documents are sent out automatically with our newsletters to all of our members. AGM & Family Conference If you are planning to attend our AGM and Family Conference in October (3rd to 5th), please complete the enclosed form and return it to our Head Office address by Friday 29th August at the latest.
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