Name of Organisation: Ataxia UK
Address:12 Broadbent Close, Highgate. London N6 5JW
Telephone Number: 02075821444
Email Address: jwilliams@ataxia.org.uk
Website: www.ataxia.org.uk
Registered Charity Number:1102391
Prevalence of Condition (if applicable):
What is Ataxia?
The hereditary ataxias can be inherited in an autosomal dominant, autosomal recessive, X-linked manner or through maternal inheritance if part of a mitochondrial genetic syndrome. The genetic forms of ataxia are diagnosed by family history, physical examination, neuroimaging, and molecular genetic testing.
What support is available?
- We provide a National Helpline, open to Members and non-Members for advice and support.
- We provide multimedia information regarding all aspects of ataxia.
- We have a thriving 16-30’s Group supporting young people post diagnosis.
- We have 50 Support Groups and Branches throughout the UK.
- We hold seminars, regional conferences and an annual conference across the UK helping people to understand their condition and take control of their condition.
Breaking Down Barriers project overview
This is a three year project which aims to encourage more diversity and study the ways that individuals with ataxia break down barriers to achieve all they wish as their genetic condition worsens.
We are developing our series of short films which form a seminar called ‘Taking control of your ataxia.’ A series of seminars are planned around the UK in local setting, to bring people together from all ethnic races, but particularly those hard to reach and nervous to become engaged. At the seminars hey meet others with ataxia and find it is supportive being with people who also have progressive speech and mobility problems. The seminar helps them understand the condition and the peer support they can find locally, and services available. This helps to remove isolation and help address depression and mental health issues arising from their diagnosis.
Our conference in October 2020 will take the theme ‘Breaking down Barriers’ and the 16-30’s will join the remainder of attendees in celebrating the barriers broken by people of all ethnic backgrounds with ataxia as it progresses.
