----- Original Message ----- From: "Kyle Bryant" To: Sent: Saturday, January 03, 2009 1:47 AM Subject: [internaf] 2009 Ataxian Athlete Initiative Hi Friends, Happy New Year! I hope you have all heard about the Ataxian Athlete Initiative presented by Ride Ataxia. I am contacting this group because I know I will reach active people in our community of Ataxians. My trike has been the single most important thing for me in my quest to continuously improve my life. I believe that the Ataxian Athlete Initiative has the potential to have the same effect on the life of a fellow Ataxian. If you are unfamiliar with the Ataxian Athlete Initiative please find out more below. Applications must be postmarked by January 15, 2009 (there is still time) and can be downloaded here: http://rideataxia.org/RAIII/AAI_09.pdf. If there are any questions or concerns, please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it.. Best wishes for 2009, Kyle *The 2009 Ataxian Athlete Initiative:* Part of the mission of Ride Ataxia is to "EMPOWER Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength." The ataxian Athlete Initiative strives to accomplish this mission. Through the 2009 Ataxian Athlete Initiative, Ride Ataxia will fund the purchase of a Terra Trike Cruiser (http://www.terratrike.com/cruiser.php) to be given to an aspiring Ataxian Athlete so that he or she may start a personal Ride Ataxia Adventure. To apply for the Ataxian Athlete Initiative individuals will tell their story by filling out a simple application and writing a summary about their experiences with Ataxia. The application is available to Ataxians worldwide. Individuals must have been diagnosed with some form of ataxia to qualify. The applications will be reviewed by a panel of Disabled Athletes, Ataxians and others in the ataxia community. The recipient will be notified by March 1, 2009. The recipient will be announced and the trike presented at the National Ataxia Foundation Annual Membership Meeting in Seattle, WA on March 20, 2009. http://rideataxia.blogspot.com

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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