Ed's Walk for International Ataxia Awareness Day

Hey, I'm Ed, I live in Guildford, Surrey, UK.

I have a hereditary cerebellar ataxia - specifically, SYNE1-related spinocerebellar ataxia (ARCA8) - it's a progressive neurological disorder that affects balance, coordination and speech. More about Ataxia here . Symptoms have slowly crept up on me during my 20s and I recently received a diagnosis, shortly after turning 30. I'm under care at the London Ataxia Centre, National Hospital for Neurology and Neurosurgery.

I was recently catching up on Ataxia UK's Twitter feed and I saw a post about 'Two Steps Towards Speedier Ataxia Diagnosis', more info here . Two boxes ticked - supporting Ataxia UK and sharing their medical guidelines with my local GP practice, speeding up diagnosis and improving care for the ataxia community.

Ataxia UK has helped me a lot in the past 6 months, with information about being newly diagnosed, advice for living with the condition, access to support groups, and supplying a handy Ataxia UK “I’m not drunk” ID card.

Too many people with ataxia have struggled to receive a diagnosis. Due to its rare nature, many medical professionals are unaware of what ataxia is and how to treat it. The Medical Guidelines, created by Ataxia UK and neurologists, aims to provide recommendations for healthcare professionals on the diagnosis and management of people with progressive ataxia.

A few times a week I walk my usual route from home then around the neighbourhood, which is just over 2 miles (with 2 or 3 rests). For this fundraiser on 25th September 2021, I will walk from home to my GP's Practice on the other side of Guildford and back, which is just over 5 miles - not loads, but it's something.

I'm happy to walk alone, though if anyone wants to join me just get in contact and we'll arrange it.

All donations will go straight to Ataxia UK to support their great efforts - researching into finding treatments and cures, and offering advice, information and support to people affected by the condition.

Thanks for reading, and thanks for any donations - every little helps!