Ann is the co-ordinator of the St Austell (Cornwall) Support Group and has previously been on the Board of Trustees. Here Ann shares with us how piloting virtual ataxia services would be beneficial for those with ataxia.
My granddaughter Chloe was diagnosed with Friedreich’s ataxia (FA) on her 13th birthday and is now 20 years old. Local GP’s and other medical professionals were not familiar with ataxia, and so access to appropriate care through a virtual service would give wider access to a faster diagnosis.
Several members of our St Austell Support Group often have to make what can be a long, costly journey to the London Specialist Ataxia Centre to have a much needed consultation with their neurologists to discuss their ataxia treatment and progress.
Although these appointments are extremely necessary for our members to effectively manage their ataxia, the cost of travel, accommodation – as well as issues surrounding mobility and accessibility can often take its toll on many families living with ataxia.
A virtual ataxia clinic would mean the world to them and their families without having to face gruelling journeys – sometimes for just a half an hour appointment.
As a former Trustee of Ataxia UK, I have personally campaigned for increasing online access to ataxia medical services for several years, so I’m delighted to know that Ataxia UK are taking part in the Big Give match funding this year to achieve this.
Match funding gives us the best opportunity to make this reality for many families living with ataxia across the UK. To double your donation this Christmas, donate to the Big Give between 12pm 3 December and 12pm 10 December here!
Stephanie, Mick and Ann at a St Austell Support Group meeting