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@...


The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

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https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

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:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

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:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
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.

 

 

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