Our blogs

Ataxia Cafe Crawl - #AtaxiaCC

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

#ataxiacc 

Past supporter events

Want to create your own fundraising event? Need some inspiration?

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.

Your Blog

Here you can find blog posts from our Friends, for our Friends. 

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, then take a look at our Blogging How-to Guide and contact Steph Marley at [email protected]  

In the meantime, why not read the blogs of our Friends? Expand the block below to check them out!

Our Friends' blogs

Read more

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.

Ataxia research conferences

Here you can read all about the ataxia research conferences that our Research team attend and help to organise.

International Ataxia Research Conferences

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.

The latest IARC was organised by Ataxia UK, FARA and GoFAR and took place in Pisa (Italy), 2017. It was key for researchers, clinicians and representatives from pharma/biotech companies who have an interest in research on ataxia. 

 

International Ataxia Research Conference 2019

Registration and abstract submission now open!

Registration and abstract submission is now open for the next International Ataxia Research Conference to be held on 14-16 November 2019 in Washington, DC. This will be the 3rd International Ataxia Research Conference where the latest research in Friedreich's Ataxia, SCAs and other progressive ataxias will be presented and discussed. For more information, to register, or to submit an abstract visit the IARC 2019 website.

Request for photos from friends 

The conference committee has asked for people of all ages living with ataxia to submit high resolution photos (1MB or higher). With the submissions from the ataxia community, we will create a slideshow presentation that will be shown throughout the conference. These presentations have been very effective in past conferences. If you would like to take part please see here for more information We hope you will consider a submission. 

Travel awards for UK clinicians

Travel awards for UK clinicians attending IARC 2019. Ataxia UK is pleased to announce the availability of a small number of travel awards of £500 towards the cost of attending IARC 2019 (http://iarc2019.org/). These are specifically for UK neurologists, trainee neurologists or those involved in clinical research in the UK. Priority will be given to those who have submitted an abstract or plan to submit a late-breaking news abstract. To apply please send a letter of intent to [email protected] by 2nd September. Applicants will then be told if they have been successful on the 4th September.

 

IARC 2019 Satellite Meetings

Satellite Meetings taking place before or after IARC 2019:

2019 International Machado-Joseph Research Disease Conference (and see here for more information)

International Ataxia Advocacy Organizations Meeting

ARCA Global Satellite Meeting

 

Previous International Ataxia Research Conferences

Below are the write ups of our past two International Ataxia Research Conferences, which Ataxia UK, along with two other ataxia organisations GoFar and FARA, helped to organise.
 
Ataxia UK's Research department regularly attend conferences at which ataxia is relevant, including those held by Rare Disease UK, Genetic Alliance, Findacure and many other such organisations. We do this to collaborate with as many organisations as possible, raising awareness of ataxia whilst contributing to research.

Research News

Catch up on the latest news from across the ataxia research world right here.