Online Support & Forums – Ataxia

Online Support and Forums

Ataxia UK Online Support & Forums

Ataxia UK Runs a variety of online support networks, and is creating more all the time. You can read about our online channels below and see how to join our networks.

Young people already have a lot to contend with: concerns of employment, relationships, homes and further education, as well as issues such as self-esteem and mental health; living with ataxia can make all of that even harder. We challenge that difficulty and isolation through our 16-30's project

The 16-30’s project is an online-based network that gives young people across the UK with ataxia access to specialised support, information and advice. This is done through a stand-alone website and blog, as well as a closed Facebook group (email Leanna Coleman at to request to join). Members of the project contribute to the blog, sharing their stories, building connections and friendships along the way.

Parents of young adults with ataxia have told us about how the group has changed their children’s lives:

"To us, the group is worth its weight in gold. Our daughter has forged some genuinely close relationships. Now that she has friends with ataxia who encourage her to stay positive, give advice and who believe in her, the whole family feels less alone and part of a like-minded community which understands what we’re going through. I can’t express to you the vast relief of seeing her smile again!”
Anneli Figura, one of our Friends

HealthUnlocked is a social network for health and wellbeing-based discussions. By finding others with similar health backgrounds, people can take on day-to-day health concerns together; and because the communities are set up by leading health organisations, people have access to credible support. Visit the designated Ataxia UK page and be sure to follow our community.

As part of our online support network, we have created an Ataxia UK blog: Your Blog. Here you’ll find advice, information and inspirational stories from various Friends and supporters of the charity, as well as blogs from our wonderful fundraisers and reflections on living life with ataxia.

Click here to read 'Your Blog,' a blog written by our Friends and supporters.

If you want to get in touch with us about sharing your story or advice with the ataxia community, email Jess Lewis at

Our Friends' blogs

Many of our Friends run their own blogs about ataxia, detailing their journey with the condition. Here are some of them!

Wendy's Is This the Wheel Life?

Wendy discusses her experiences in dealing with the public perceptions and societal limitations that impact her life with ataxia: "the reality of disability in modern Britain," including how to plan a wedding when you have ataxia. Great for: well-written prose and reflections on life as someone with ataxia.

Iain's Kilted Walker

Follow Iain as he walks ... pretty much everywhere around the world in his kilt! Iain has worked hard to get into every local newspaper he can along the way, raising awareness of his condition, and fundraising as he goes. Great for: fundraising inspiration and taking control.

Amanda's Boy Number Two and Me

Amanda is the mother of Sebastian, aged six, who has episodic ataxia. Her blog discusses her personal experiences in caring for a child who has additional needs. Great for: parents of children with ataxia.

Arran's Eleanor Creative Blog

Read Arran's professional blog about running her own Creative Marketing company after receiving her SCA6 diagnosis. Great for: people with ataxia wanting to read about employment, and taking control.

Ataxia UK Twitter

The Ataxia UK Twitter Feed is a great place to access the most up-to-date information we find about ataxia, disability news and relevant information from other neurological research charities. Stay up to date by following us.

Ataxia UK hosts a range of Facebook groups to support people with specific needs. You can join any of these closed groups by emailing Steph Marley at

Ataxia UK Facebook Page

Like our facebook page to keep up to date with our latest news, links to useful support and organisations, and to see the amazing work our fundraisers do to support people with ataxia and raise funds for research.

16-30’s Facebook group
A Facebook group aimed at young adults with ataxia to share support, advice and foster friendships with others who understand their experiences. This is group is part of our 16-30’s project, which you can read more about below.

Parents with ataxia Facebook group
Our Facebook group for parents with ataxia is a great place to access advice and support about giving birth and starting a family with ataxia. If you would be interested in joining the group, send us an email at and we will send you an email invitation to join!

Volunteers Facebook group
Want to support people with ataxia? Have skills you think we could use? We’d love to hear from you. Get in touch with Julie Greenfield at to enquire about volunteering opportunities.

Join in the fun on our Instagram channel!

This platform is Ataxia UK's informal community space for everyone affected by ataxia, our Friends, supporters and staff. Following our Ataxia UK Instagram channel is your chance to see a bit of what goes on ‘behind the scenes’ at Ataxia UK and to get to know all of us in the office a little bit better. You can also follow Hope the Bear on her travels, as she treks across Britain to attend events, labs and staff meetings!

As you may know, Instagram is a smartphone-based social media channel, primarily used to share pictures and videos. Keep your eyes peeled for anything that you think other people in our ataxia community would enjoy, take a quick snap and tag us @ataxia_uk !

For more information on spinocerebellar ataxia type 29, spinocerebellar ataxia type 14 discussion and discussion with the Dentatorubral pallidoluysian atrophy (DRPLA) community. This online forum is owned by RareConnect not Ataxia UK.

Click here for the Dentatorubral pallidoluysian atrophy (DRPLA) community discussion

Click here for the spinocerebellar ataxia type 29 (SCA29) discussion

Click here for the spinocerebellar ataxia type 14 (SCA14) discussion

Click here for the SPG7 discussion


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