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Notice: Ed’s Walk For International Ataxia Awareness Day

Published on: 12 Sep, 2021
Updated on: 12 Sep, 2021

On Saturday, September 25, Ed Forshaw will take part in Ataxia UK’s ‘Two Steps Towards Speedier Ataxia Diagnosis’ campaign.

Ed has hereditary spinocerebellar ataxia. Although it’s rare, the genetic mutation is known and was identified during specialist genetic tests.

His symptoms slowly crept up during his 20s and he received a diagnosis shortly after turning 30.

Fundraising for Ataxia UK.

Ed is being sponsored to walk from his home to his GP’s Practice, on the other side of Guildford and back, just over 5 miles. He will hand them a copy of the Ataxia UK Medical Guidelines to speed up diagnosis and improve care for the ataxia community. Several of his friends and family will join him.

He said: “I originally thought I’d be fine walking alone, but I’m now really looking forward to having support with me to help raise awareness about ataxia.”

Ataxia is an umbrella term for a group of progressive neurological disorders that affect balance, coordination and speech. Many of the ataxias do not currently have a cure, and typically, to help ease the symptoms, treatments such as physiotherapy, occupational therapy, and speech therapy are recommended.

Ataxia is not well known within the medical community and it is difficult to receive a referral to a specialist neurologist early on during diagnosis. While there are many ataxia patients that are presenting symptoms, the underlying cause is not yet known.

Ed said: “Ataxia UK focuses on research into finding treatments and cures, and offering advice, information and support to people affected by the condition.

“They have 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.

Anyone can help by donating and sharing the fundraising campaign on social media. All donations will go straight to Ataxia UK.

The fundraising campaign can be found at https://www.gofundme.com/f/eds-walk-for-international-ataxia-awareness-day.

 

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