http://www.doncasterfreepress.co.uk/free/Toyah39s-giant-leap-for-charity.4203267.jp

 

 

Toyah's giant leap for charity cash

  • Doncaster, 19 June 2008 12:56 PM

BIG JUMP: Toyah is sky-diving

BIG JUMP: Toyah is sky-diving

 

A YOUNG woman with a long-term disability is set to sky-dive in a bid to raise thousands of pounds for people with the same illness.

Twenty-seven-year-old Toyah Wordsworth was diagnosed with Friedreich's Ataxia, a progressive neurological disorder which destroys the nervous system when she was 13-years-old.

But Toyah, who devotes her time to educating people about disabilities, is so determined to make more people aware of the disorder she is going to go as far as throwing herself out a plane in the skies above Brigg on July 13.

Toyah said: "I decided to raise money for research. The charity Ataxia UK doesn't seem to get that much attention. People have never heard of it before and I always have to explain what it is.

"To be honest I'm not scared. When I get there I might be but if I get the sponsorship that will make me do it.

"I'm hoping they will be able to spend the money on publicity and research into the disorder to help people in the future."

So far Toyah has raised over £600 but she hopes that contributions from
Doncaster
people and businesses will help boost it to thousands.

To donate, visit
www.justgiving.com/toyah



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.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

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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