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Ataxia is so rare that it can take years for people to receive a correct diagnosis. David shares his journey here.

Kathy has cerebellar ataxia and her daughter, Kizzy, is her carer. Together, they have started a blog to share their outings and tips with you.

After doing a good deed and looking out for her neighbour, Beryl was left feeling deflated and upset.

Derek has had accusations thrown at him about being drunk, but he uses this opportunity to explain what ataxia is.

Laura shares with us a time at university that filled her with anger and shame.

Dan shares a story that left him feeling embarrassed and upset, and how the situation could have been helped.

Tara shares a difficult story of a time when someone accused her of being drunk, and another time she was unable to explain her condition by herself.

Kimberley has started the very important campaign ‘places to change’, here she shares the reasons behind it.

Here, Jason shares the journey of his ataxia diagnosis; the things he has lost along the way and how his mindset is now.

Read this expressive poem about ataxia, and how it affects Linda’s everyday life.

Read about Jonathan’s journey of diagnosis and coping through his passion of music.

These are the children you’re helping this Christmas by donating to The Big Give: one day left.

“Children meeting Jo-Jo for the first time are wary, they just don’t seem to know how to play with her. Her walking frame is a quite literally a barrier to intimacy. They don’t want to hold her hand at a party.”

“Her school thought we were making it up; they thought I’d fabricated her ataxia. They put Jade on the child protection register.”

“Nothing could prepare me for what I was about to hear: “he’s lucky to have even lived past two years.”

“A Specialist Ataxia Centre for children could help us find treatments that are effective now. Seb could be well; could develop; could enjoy his childhood, without the barriers that ataxia brings.”

“There was no one to tell me how I should handle all this, no one who could point me in the right direction, no one to teach me how to manage my symptoms.”

“I don’t even feel like I had a childhood. I mean, I still grew older but it seemed the older I got, the worse I got. Symptoms. Hospital appointments. Diagnosis. More, and worse, symptoms. Hospital appointments.”

Jordan Jervis has spinocerebellar ataxia type 1. But this hasn’t stopped him pursuing his dream of becoming a clothing designer.

David Lowe was awarded the Jerry Farr Travel Fellowship in 2016 that allowed him and his wife, Glenys, to visit Australia.

Alan Maxwell tells us about his late wife, Jane, and her achievement in putting together her autobiography on living with ataxia, ‘Forever Yours.’

Deanna tells us about receiving her Friedreich’s ataxia diagnosis, humorously listing the pros and cons of having the condition, and how her attitude towards life has changed since.

The Exeter Campaign: Rachel Lyons, Lord Mayor of Exeter 2013-14, was instrumental in helping Ataxia UK and the Exeter Branch to fund an awareness campaign by choosing us as her charity of the year.

The Exeter Campaign: Beka is 15 years old, and has Friedreich’s ataxia. She was once an award-winning horse rider, but can no longer ride. This is her story.

The Exeter Campaign: Meet Bex, the face of the Exeter campaign. Bex has long been involved with the Ataxia UK support network, starting her own Branch of the charity in Exeter eleven years ago.

The Exeter Campaign: Phil has episodic ataxia, which can attack at any time without warning. The unpredictability of his condition has limited what he’s able to do for work as well as pleasure.

Hi Adam,
Thanks for your help with this! I would like to feature the following content in a ‘read more’ expandable block beneath the existing text on this listing page: https://www.ataxia.org.uk/Blogs/our-friends-blog/Category/members-blog
Many thanks indeed!
All the best,
Steph

Nigel Davis was diagnosed with idiopathic spino-cerebellar ataxia (SCA with an unknown cause) at 17. He was able to manage his condition for some time, but after teaching for 19 years, he was forced to retire.

Will Martin is 27 and was diagnosed with Friedreich’s ataxia whilst at secondary school. Will talks to us about how ataxia has isolated him from his peers, made him deflect from education and shares his crowdfunding goals for a new wheelchair.

Tallulah is 19 and has Ataxia with Oculomotor Apraxia Type 2 (AOA2), one of the rarest forms of ataxia. It took a full decade to receive a diagnosis, and she’s already fundraising for ataxia research.