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Source: Wigan Evening Post
Location: Wigan (UK)
Last Updated: 21 April 2008 10:05 AM
Support group for Ataxia set up
A support group for sufferers of a neurological condition has been set up in Wigan.
Ataxia is a progressive condition affecting more than 10,000 UK people.
Symptoms can include loss of co-ordination, slurred speech and problems with vision, hearing and swallowing.
The new branch of the national Ataxia UK group will provide support, advice and information for sufferers and their families across the region.
SUPPORT: John Guhry
Former lecturer John Guhry, who helped set up the North West branch and is its chairman, said: "When I was diagnosed with Ataxia I had never heard of it. I found Ataxia UK on the internet, but there was no support group in the area."
After a meeting with other sufferers, it was decided to form a branch based in Wigan, as it was central to the region.
Mr Guhry, from Abram, said: "We're a new group but the interest is there. I am getting calls every other day from people interested in finding out more.
"We want to raise awareness of the disease and our branch. A lot of people would like to join a support group, but don't know we're there."
Ataxia can have a serious impact on a sufferer's life and Mr Guhry added: "I had to leave my job because the day-to-day problems were getting the better of me. The symptoms are like being drunk. There are balance problems, you feel tired, dizzy and cold."
Meetings will be held bi-monthly at Little 15 in Wallgate, Wigan. The next meeting is scheduled for May 21 at noon.
For details call Mr Guhry on 07984 512383 or e-mail johnguhry@...
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Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.