So, on we go  in preparation for the 2026 Xtreme Hike from Rim to Rim of the Grand Canyon on October 8th - 11th, a fundraiser supporting National Ataxia Foundation!  

I am Jonathan Stone, a 67 year old performer /musician /writer based in London UK. I was diagnosed with Spino-Cerebellar Ataxia (SCA17) in March 2017.

 18 years ago I went to the children’s zoo with my 3 year old daughter. I held her in my arms as a reindeer came over to say hello, its head came close over the fence and it nuzzled towards us,but just as my daughter was going to stroke its head, I suddenly, inexplicably, lost balance and fell over. She wasn’t hurt but my fall shocked us both.

I was her ROCK! I LAY helpless on the floor! I felt totally ashamed. 

That was in 2008. 

9 years later, in 2017 I was diagnosed after genetic testing at the National Neurological Hospital in London. 

Now, 9 years later again in August 2026, fortunately my condition is currently stable, I am getting fit enough to undertake this fund raising hike for the National Ataxia Foundation. Although I have balance problems and falls, I am lucky compared to many with Ataxia. It’s a horrible condition. The medical authorities still don’t know much about it. That why raising money for Research is so crucial. But research is not just about cure, it’s also about managing and living well.

Nobody knows ...

Why do I get it, while many in my family who also have genetically the same condition as me, don’t? For some it’s dormant, it never develops. Doctors seem happier to admit now that they simply don’t know. None of us do! What triggers it?

There are so many factors at play as well as genetics, environmental issues in early childhood, lifestyle choices, good food, bad food, stress, living alone, living apart, city living, attitude and many others.

But having lived with my particular kind of Ataxia for some years I know exercise good food and spirit helps.

 When I was diagnosed I found a fact sheet that told me I had a 76% chance of developing dementia. I was terrified. But it’s not true. Well intentioned, but the facts are more complicated than that.We all know. But on we go …

Why not think of Healing rather than Curing?

its more realistic.

We know ataxia is currently incurable and waiting for a cure when there isn’t one, is depressing and disempowering. 

But however bad your Ataxia is, you can accept and adapt. That’s Healing, not Curing.

Its not ‘what kind if illness does the patient have?’  But ‘What kind of person is dealing with their Ataxia and How?’.

The attention is on the person not the illness.

 I used to use a walking stick in my right hand to keep balanced, using it to support me- I was leaning heavily to it, it was making me dependant. It was a way of saying ‘I’m ill. Disabled! Helpless!’ 

Now, I use hiking sticks and walk a lot which says I am moving forward, living with what I got. Surviving! My posture is better. I am more aware, more upright.

 So please, help us by donating to Ataxia research. Its needed.

 By helping to heal Ataxia you are helping to heal us all.

So on and on we go …

You can help by donating or sharing my story:

• Donate: Contribute whatever you can. No amount is too small!
• Share My Story: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness.

We love your support, 

Thank you,

For more information on the National Ataxia Foundation, 

visit our website at ataxia.org