Our blogs

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

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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.

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.