Source: http://www.theunion.com/article/20090111/NEWS/901099972/1001/NONE&parentprofile=1053&title=Cycling%20trip%20raises%20awareness Cycling trip raises awareness Local man raises funds for Friedreich’s ataxia research By Dave Moller Senior Staff Writer Sunday, January 11, 2009 Kyle Bryant’s battle against the neuromuscular disease that attacked him in high school is turning into a life quest. Kyle Bryant now lives in Sacramento, where he is an environmental engineer. He is currently training for his third cross-country ride to raise funds to research Friedreich's ataxia, a neuromuscular disease he came down with in high school. The 2000 Bear River High School grad who has cycled 3,100 miles in two cross-county trips gathering money to battle Friedreich’s ataxia is planning a third trip from Portland, Ore., to Seattle, Wash. in March. “It’s developing into something far beyond me and my family,” said Bryant, 27, an environmental engineer. “We’re working very closely now with the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance” to raise another $100,000 for the Kyle Bryant Research Award, which funds grants to research the disorder. The rare disease, which has no cure, attacks muscles and causes Bryant to walk with a stilted gait and slur his speech. It causes progressive coordination loss and usually lands the victims in wheelchairs. Bryant uses his wheelchair when he needs it, and he rides a three-wheeled cycle during the trips because of his condition. He has raised $350,000 in his first two trips through personal donations and the national ataxia groups, all of it going to the research. The first trek was from La Jolla to Memphis, Tenn., in 2007, with little pre-publicity. Once in Memphis, he attracted the interest of the two ataxia groups and their money at the foundation’s national convention and has been working with them ever since. In 2008, Bryant, his family and other Team Ride Ataxia members cycled from his home in Sacramento to Las Vegas to the foundation’s national convention. Bryant has suffered a bad knee injury and broken tricycle parts during his endeavors but always persevered. “The rides always give me something to work for,” Bryant said, and he thinks it helps with his affliction. “It’s a shorter ride this year, but now I have to eat better and train so it’s becoming a lifestyle thing. “We wanted to ride from Sacramento to Seattle this time but the weather in the Pacific Northwest can be rough, so we figured four days of misery is better than 25.” This year’s ride begins March 16 from the Oregon Health Sciences University in Portland and is scheduled to end March 19 in Seattle at the Ataxia Foundation’s 52nd annual meeting. If you want to learn more about Bryant’s quest, join the ride, or simply donate to the cause, log on to http://www.rideataxia.org. Rider applications and deposits are due Feb. 15. To contact Senior Staff Writer Dave Moller, e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. or call 477-4237.

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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