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Hollyoaks Actor Juan Pablo Yepez on His HD Connection from Our from Our Chief in This Edition… Chair of Trustees Executive

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Hollyoaks Actor Juan Pablo Yepez on His HD Connection from Our from Our Chief in This Edition… Chair of Trustees Executive Research updates Ideas and insights for activities in HD #TeamHDA fundraising successes Branch and support group news Winter 2016 Hollyoaks actor Juan Pablo Yepez on his HD connection From our From our Chief In this edition… Chair of Trustees Executive 4 HDA news Supporting As a member of a family affected 7 Research by Huntington’s disease, and Updates and clinical trials Chair of our Trustees, I’m lucky one another enough to see some of the range 12 Special feature of work which the HDA does, and I’m consistently impressed Hollyoaks actor Juan Pablo by the passion and dedication of the HDA team, and It was wonderful to see so many people at our feedback about the look and content of our Yepez on his HD connection all the amazing volunteers and fundraisers. I hope this recent Family Weekend and AGM in Telford. We materials, please email [email protected] 14 magazine gives you a flavour of some of what you’ve all hope the workshops and talks by HD experts Advice feature been up to around the country. gave people insight into developments in HD Recent changes to the ESA assessment Ideas and insights for research and practical advice to help them in process signal a positive shift in the DWP’s activities Of course behind what we see, there’s a huge amount their day to day life. I feel incredibly privileged approach to benefits for those people with of work behind the scenes, to support our vital national to attend this weekend each year and witness long term illnesses. This is a welcome change 16 Photo feature network of SHDAs, to raise the almost £2m per year we the friendships formed as those living with HD and a common sense approach that we hope need, and to provide services for people affected by come together to support one another. will continue to be adopted in relation to Inherent: a Huntington’s HD. The HDA is relied upon to be a source of accurate benefits and services for people with long disease story information on HD, is increasingly called upon to help I would like to extend a special thanks to those term conditions. We have recently registered 18 inform media discussions (such as the recent BBC radio who attended our website feedback workshops as a stakeholder to allow us to comment on Branch news programmes and Casualty storyline, which are vital for during the weekend. Our website is an integral NICE (National Institute for Health and Care 20 raising awareness of HD), as well as influencing and part of how we share information about HD and Excellence) guidelines on depression in adults HDA activity training health and care professionals and policy makers. our services and we want to make sure it meets and children, patient experience in adult NHS Everything is focussed on helping people affected by your needs. It was great to gain your views on services and patient experience in adult mental 22 Fundraising HD and improving the care available, and we want to be how our website can be improved from a user’s health services, which we hope will contribute to Highlights from #TeamHDA able to do even more to help in future. point of view. As always, we welcome your improving health services for people with HD on a national level. 26 AGM I’d like to pay tribute to our former Trustee and Company Secretary Peter Morse who stood down “HD is a disease that has HD is a disease that has remained unspoken 28 this summer after many years of dedicated service to about for many years, but little by little Tips and advice the HDA. We will very much miss Peter both for his remained unspoken about for awareness and understanding of the disease 29 contributions as a Trustee, and his good humour. We many years, but little by little is growing. This is undoubtedly largely due Tributes do however welcome a new member to the board Dr to the determination and resolve of our Alan Fryer, a geneticist from the North West, and I look awareness and understanding dedicated supporters who give their time to forward to working with Alan in the coming years. of the disease is growing.” tirelessly fundraise and increase awareness and understanding of the challenges faced by the Contact us I hope you enjoy this magazine. I’d also encourage you HD community. We were thrilled to celebrate to take a look at the HDA’s annual report, which gives the work of our volunteer fundraisers and thank 0151 331 5444 more information on what we’ve been up to over the them for their enormous contribution at our www.hda.org.uk past year. You can download a copy from our website first volunteer awards evening in June (read [email protected] or request a copy by post by calling 0151 331 5444 or more on page 22). emailing [email protected] @HDA_tweeting Our committed supporters help shine light on @hdauk Thank you. HD and the services of the HDA which helps us to reach those that need us most. On behalf of Visit www.hda.org.uk/hda/shdas Andrew Bickerdike the HDA, thank you for your incredible support for the contact details of your and dedication. local Specialist HD Adviser Email: [email protected] Twitter @andybickerdike Cath Stanley Front cover photo courtesy Chief Executive of James Stack www.stackphotography.co.uk 2 3 HDA news HDA news Dr Ed Wild on Woman’s Hour presented by HD open day Jenni Murray BENEFITS Reassessments in Manchester for DSA to be scrapped by the Specialist HD Adviser Debra Department for Robinson (left) Work and Pensions with volunteers Jacqueline In October, the Department for Kerfoot and Work and Pensions announced Alison Ashton that it will no longer be necessary for people with long term conditions claiming Employment Support Allowance (ESA) to be reassessed. NEW TRUSTEE The Huntington’s Disease HDA welcomes Association welcomes this HD discussions decision. Cath Stanley, Chief new member Executive, said: “We are to Executive on the airwaves delighted with this common Council sense approach. Huntington’s disease is progressive and We are delighted to therefore symptoms deteriorate welcome Dr Alan Fryer to In just a five month period, Huntington’s disease has over time. Taking away the the HDA’s governing body, In October we joined forces with the Manchester Centre featured on a number of radio programmes, including need for constant reassessment the Executive Council, also for Genomic Medicine (MCGM) to host an open day at BBC Radio 4’s Inside the Ethics Committee, Woman’s will help alleviate some of the known as the Board of Manchester Town Hall for anyone in the North West uncertainty and anxiety that Trustees. Hour, and Radio 2’s the Jeremy Vine Show. affected by Huntington’s disease. people affected by HD have faced in the past.” Now retired, Dr Fryer brings Inside the Ethics Committee, a Woman’s Hour approached a wealth of experience from The aim of this day was to help alongside discussions panel debate show presented us to help them find someone New criteria are being developed the field of clinical genetics, connect people, and to highlight throughout the day including by Joan Bakewell, discussed to talk about HD for a show for the ESA; the benefit for having trained with Professor exciting research developments how to participate in research Huntington’s disease and in July and we put them in those who cannot work because Peter Harper in Cardiff as well as the clinical care and locally, what is involved in having the ethics of sharing genetic touch with Dr Ed Wild, who of ill health or disability. The between 1987 and 1990, support available across Greater a predictive test and talking to information. A real life and joined family members to announcement does not affect where he observed pilot Manchester. children about HD. high profile court case speak about HD, living with the Personal Independence studies in predictive testing formed the basis of the HD risk, genetic testing and the Payment (PIP), which helps for Huntington’s disease. Manchester Centre for Genomic Rhona Macleod, Consultant discussion, in which a woman major developments being with some of the extra costs After relocating to Liverpool, Medicine provides genetic Genetic Counsellor at the was barred from bringing made in HD research. Presenter caused by long term ill health or Dr Fryer developed a genetic counselling for families and Manchester Centre for Genomic a negligence claim against Vanessa Feltz brought HD into disability. register for Huntington’s specialist clinics for those Centre, said: “The open day the NHS for not revealing discussions when she covered disease in Merseyside and affected by the condition. celebrated the resilience shown that her father had HD when an episode of the Jeremy Vine If you need advice or offered predictive and The team has an international by so many people in the face of she became pregnant. HDA Show, with genetic testing a i support to understand diagnostic testing for HD, reputation for research and has HD. There is a massive research trustee and founder of HDYO, key focus of the dialogue. the benefits that may be after the Huntington’s gene been selected as one of only six effort by the HD community Matthew Ellison, formed part applicable to you, or someone was discovered in 1993. sites globally to participate in a which has led to the first disease of the panel and our Chief These discussions were a great you know with HD, please He led the Cheshire and phase 1 gene silencing treatment modifying treatment trials now Executive, Cath Stanley, gave opportunity to raise awareness contact 0151 331 5444 to speak Merseyside HD genetics trial for Huntington’s disease.
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