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.

Since the pandemic, many of our Branches and Support Groups have been running their meetings on Zoom. You can find a list of upcoming meetings and the group leader contact details here.

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. 

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 closed Facebook group (email Leanna Coleman at communications@ataxia.org.uk to request to join). Members of the project contribute to the blog, sharing their stories, building connections and friendships along the way.

The group also does monthly online meetings on Zoom, details of which can be found here.

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 Leanna Coleman at communications@ataxia.org.uk.

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.

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 Leanna Coleman at communications@ataxia.org.uk.

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 and share experiences. If you would be interested in joining the group, send us an email at communications@ataxia.org.uk 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 our InControl team at volunteering@ataxia.org.uk to enquire about volunteering opportunities.

DRPLA Support Facebook group
This group is specifically for anyone who is affected by the rare type of ataxia - Dentatorubral-pallidoluysian atrophy (DRPLA). Email spradesabadias@ataxia.org.uk to be invited to the group. 

AOA2 Support Facebook group
If you are affected by Ataxia with Oculomotor Apraxia Type 2 (AOA2), this group share experiences with each other and offers support. Email communications@ataxia.org.uk for an invite.

Parents of children with ataxia Facebook group
Talk to other parents for advice and tips about children living with ataxia. Email communications@ataxia.org.uk to be invited to the group.

Spouses and partners of people with ataxia Facebook group
This group supports those affected by ataxia where you can meet others in a similar situation. Want to join? Email communications@ataxia.org.uk.

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. 

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 the ARSACS, 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

Click here for the ARSACS discussion

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