The group is for anyone with ataxia aged between 16 and 30 years old, looking to meet with others and make friends. The group is to support young people with ataxia and acts as a support network. Speaking to others who know how you feel can sometimes be the best kind of support. People who know exactly what you are going through, who can offer support and who can be unashamedly honest with one another! If you'd like to join the private Facebook group, drop Leanna Coleman an email at [email protected] and she'll send you an invite to join.
On Friday 19 April, Ian Morley and his family and friends gathered together to walk the Ataxia Café Crawl, setting off from Middleton Sports Club and finishing at Portslade Cricket Club.
Ian Morley, organiser and close friend to another Ataxia UK Friend, Richard Bradford, brought together this team of passionate fundraisers, inspired by Richard and his daughter Meg’s story.
Meg has Friedreich’s ataxia (FA) and at only 16 years old, Meg already relies on a fully automated chair to get around, and her condition is progressing at an aggressive pace.
Eighteen people completed the event in the scorching hot weather on Easter weekend, raising awareness of ataxia along the way and together raised over £2,500.
Ian expresses his gratitude for the local companies who supported the team with food and drink: “La Patisserie in Shoreham were amazing. The staff all wore ataxia badges, they had a collection tin leading up to the event and supplied the walkers with a plate of biscuits and cakes when we arrived.”
Portslade Cricket Club shared the event on social media in the lead up to the event and organised a BBQ for the team at the finish line. “An incredible day with amazing support from so many people, thank you to Portslade CC for an amazing welcome to the end BBQ!” The Club are also planning a charity cricket day on Sunday 25 August in aid of Ataxia UK.
Sharon Read has ataxia and took part in the event: “I was totally overwhelmed by the standing ovation I was given when I reached the Cricket Club. It was such a lovely day and my heart and thanks go out to all of you who took part in the walk on such a hot day to raise money for a very good cause.”
Thank you so much to everyone that took part and a special thank you to Ian for all his hard work and efforts.
Find out more here
Over the years, we have had incredible, thoughtful, daring and brilliant fundraising ideas from fantastic supporters. Check them out and be inspired.
Having your own event for other people to join is great team spirit, as you can see from the events listed below.
The Fundraising team are always happy to talk to you about ideas, if you'd like to discuss, you can email [email protected] or call the office on 020 7582 1444.
They can feature anything from advice to personal stories, or thoughts and ideas about the future. If you'd like your work to be featured in this blog contact Leanna Coleman at [email protected]!
In the meantime, why not read the blogs of our Friends? Expand the block below to check them out!
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.
Tallulah's Ataxic Fantastic
Tallulah's blog is a mindful and insightful exploration of being a young woman and student - and one who has ataxia. Great for: people with ataxia who want to reflect on society and community.
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.
Kiara's Friedreich's Ataxia Journey
Particularly useful for our Irish readers, Kiara's blog explores support, care and living with ataxia in Ireland. As our own support is UK-based, Irish readers may want to visit the Ataxia Foundation Ireland charity, of which Kiara is a member. Great for: Living with ataxia in Ireland.
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.
Becky and Dan's Head over Wheels
Follow the journey of Becky and Dan, a new couple in which one person has ataxia, and the other is learning all about it. Dan’s partner Becky shares her journey of understanding disability from an able-bodied perspective, and how they support one another, in a wonderfully positive and insightful blog about falling in love.
International Ataxia Research Conferences (IARC) are held every two years and hosted in a different country every time. Ataxia researchers from across the world come together to share the latest news and results of research.
The first IARC was held in 2015 at Windsor (UK), and hosted by Ataxia UK. It was the largest conference on ataxia ever held, and was incredibly successful.
2019 International Machado-Joseph Research Disease Conference (and see here for more information)
International Ataxia Advocacy Organizations Meeting
ARCA Global Satellite Meeting