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.