About Ataxia UK Ataxia UK events Ataxia UK Annual Conference 2019 The Ataxia UK Annual Conference is our biggest event of the year Over 200 delegates from across the UK came together to hear the latest updates about ataxia research and care; met with neurologists and specialist professionals; discussed the condition in workshops, talks and seminars; accessed information, support and advice; socialised with friends, and enjoyed a dinner and a dance! Annual Conference 2019: Making Connections Friday Agenda 11.30-17.00 All About Ataxia (separate booking required) Join Ataxia UK Trustee Richard Brown and Ataxia Ambassador Gemma Fish as they present information videos made by Ataxia UK with Sheffield Ataxia Centre explaining the impact of ataxia. 16.30-18.30 Registration 18.30 FA Research Update Slides 19.00 CA Research Update Slides 19.45 Buffet (requires separate booking) Saturday Agenda 8.30 Registration opens 9.30 Welcome and Housekeeping Paul Coia 9.40 Ataxia UK update Sue Millman Slides 9.55 Accessing the Motability car scheme Lesley Bysouth, Head of Communications, Motability Slides 10.05 Managing your Mental Wellbeing Malena Hallahan, Physical Health Psychology therapist 10.20 Independence through Shared Ownership Mariana Senior, Advance Housing & Support 10.30 Only Connect: disability, friendship and community Prof Tom Shakespeare 10.45 It works for me - meeting online Dan Pettitt and Becky Henley Slides 10.55 Break 11.15 Separate Research updates, lunch and Doctor’s Q&A for CA and FA delegates 11.15-12.00 FA Doctor’s Q&A 11.15-11.45 CA Research updates 12.00-13.15 FA Lunch 12.00-12.45 CA Doctor’s Q&A 13.30-14.00 FA research update 12.45-14.15 CA Lunch Slides 14.15 Breakouts 16-30s spin off On Saturday morning we had a stand alone conference for our 16-30s delegates on the topics of intimacy and relationships. We heard from Alison Halls and the opportunities to access financial aid from the Mark Dower Trust! You can find Alison's slides here. Breakouts A Own your own home! Mariana Senior, Home Ownership Manager, Advance Housing & Support. Advance has developed a unique shared ownership scheme for people on benefits whose family or friends are able to give them just £15,000 to get them started. B Managing gluten ataxia Dr Heidi Urwin, Research Manager Coeliac UK. Heidi will share Coeliac UK's many years’ experience in helping people manage gluten free diet, and the handy app they have developed for your phone. C Yoga Yoga can improve flexibility, strength, balance, and stamina. It can even be done from a wheelchair. Come and learn how. D FA Nicotinamide trial Prof Paola Giunti & Dr Julie Greenfield explain what engaging in the forthcoming Nicotinamide Trial for FA will mean for participants E Benefits and Grants Carlos Hagi is a CAB Benefits Advisor who also works independently. Come to the lesson to learn what you might be entitled to and how to claim it. F Neuro Physio for people with ataxia Use it or lose it, is the mantra among many people with ataxia. Come and learn come exercises to keep you moving. Slides G Managing your Mental Wellbeing What mental health services are out there for people with rare conditions and chronic illnesses? Physical Health Psychology therapist Malena Hallahan chats about what can help you, both on the NHS and in private practices H Music therapy North West London Branch have recommended this as a breakout in which everybody can get involved. 15.15 Break 15.35 It Works for Me: Shane Batby, The Ataxian Entrepreneur Shane Batby & Hardeep Raj 16.00 Challenging traditional images of disability Dan White, Cartoonist, creator of Cindy and Biscuit nominated for Best Children’s Comic British Comic Awards 16.15 Heads & Tails Mike Garrett 16.25 Awards Best Branch/Support Group 2019; Anne Ford Cup & Ernie Heath Shield 16.40 Review of the Day Paul Coia and Harriet Bonney 17.00 Close Evening agenda 17.30-18.30 Branch and Support Group meeting Sue Millman 19.15 Assemble for dinner 20.45 Evening entertainment Steve Hewlett, ventriloquist with his friend, Arthur Lager Please fill out this survey after the Conference and let us know your thoughts on how it went! Booking for this event has now closed.