----- Original Message ----- From: FARA, NAF, Ride Ataxia To: This email address is being protected from spambots. You need JavaScript enabled to view it. Sent: Tuesday, January 06, 2009 7:41 PM Subject: Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey FOR IMMEDIATE RELEASE Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey January 6, 2009 — Kyle Bryant and Team Ride Ataxia are preparing to begin their third cycling journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia (FA) with which Bryant and other teammates are affected. The team will begin the ride on March 16, 2009 at Oregon Health Sciences University in Portland, Oregon and conclude in Seattle, Washington on March 19, 2009 at the National Ataxia Foundation's 52nd Annual Meeting. It will be a 4-day trip covering 200 miles. Bryant and Team Ride Ataxia have cycled 3,100 miles cross country in the past two years. In 2007, Bryant and his father, Mike Bryant completed a 2,400 mile bike ride visiting FA researchers and patient families from La Jolla, California to Memphis, Tennessee. In March 2008, the Bryants were joined by many new teammates including 6 ataxians on their bike ride from Sacramento, California to Las Vegas, Nevada. The funds raised by the team on their cross-country “Ride Ataxia” have gone directly to the annual Kyle Bryant Research Award for translational research in FA. In 2008, the team raised $142,000 and the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance added sufficient funds to bring the award total to $250,000. Ride Ataxia, NAF and FARA co-funded two $125,000 awards in 2008. One award was made to Repligen Corporation, Waltham MA, which in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award went to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al-Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA. NAF Executive Director Michael Parent commented, "NAF is excited to again partner with Kyle Bryant, Team Ride Ataxia and FARA for the third annual cycling journey. NAF applauds Kyle and Team Ride Ataxia for their continued efforts to support vital Friedreich’s ataxia research and enhance ataxia awareness. NAF looks forward to collaborating again this year with FARA to help accelerate important translational research in FA. “ FARA President Ron Bartek added, "Kyle Bryant, his family and his Ride Ataxia teammates are real difference makers. These courageous, resourceful and dedicated people have made their cycles into vehicles of change that have vastly expanded the horizons of awareness regarding Friedreich’s ataxia and have significantly increased financial support for Friedreich’s ataxia research. FARA is deeply grateful to Kyle and Team Ride Ataxia and looks forward to the 2009 Team Ride Ataxia/FARA/NAF collaboration that will once again focus increased awareness and resources on the research that will result in treatments and a cure.“ Team Ride Ataxia has set a goal of raising $100,000 towards research for Friedreich's ataxia in 2009. The team is seeking cyclists to join them on their journey as well as sponsors. For information about participation or to make a donation please visit http://www.rideataxia.org. Participant applications and deposits are due February 15. Bryant stated, “In 2009 Ride Ataxia looks forward to continued success raising awareness, collaboratively funding research, and empowering ataxians and others to seek their fitness goals and have fun doing it.” Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. Onset of symptoms can vary from childhood to adulthood and can include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); diabetes, and a serious heart condition. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. There is currently no treatment or cure. About FARA The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org About NAF NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. http://www.ataxia.org Contact Ronald Bartek President, Friedreich's Ataxia Research Alliance (703) 426-1576 This email address is being protected from spambots. You need JavaScript enabled to view it. Michael Parent Executive Director, National Ataxia Foundation (763) 553-0020 This email address is being protected from spambots. You need JavaScript enabled to view it. Kyle Bryant Founder, Ride Ataxia (916) 203-3238 This email address is being protected from spambots. You need JavaScript enabled to view it.

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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