FARA, NAF, Ride Ataxia Joint Press Release

FOR IMMEDIATE RELEASE

Cyclist with Rare Neuromuscular Disorder to Arrive in Seattle March 19 Completing 4 Day Cycling Journey

March 12, 2009 Seattle—Kyle Bryant and a team of 65 cyclists will arrive at the Doubletree Hotel Seattle Airport Thursday, March 19 at 2pm completing a 200 mile cycling journey to draw attention and raise research funds for the rare neuromuscular disorder Friedreich's ataxia with which Bryant and other teammates, including Seattle native Sam Bridgman, are affected. Bridgman is a senior at Nathan Hale High School, works for the Seattle Mariners and will be cycling this year with his family and three of his close friends.

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.” The riders began their journey March 16 on the Oregon Health and Science University Campus in Portland. Bryant and the Ride Ataxia team will conclude the journey at the National Ataxia Foundation's 52nd Annual Membership Meeting.

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.“

Outback Steakhouse is a proud supporter of Friedreich's ataxia research through sponsorship of this year's Ride Ataxia journey. Jon Lakefish, Director of Franchise Marketing for the Evergreen Restaurant Group stated, “All our Outback Steakhouse locations in the Northwest are raising funds to help with Friedreich's ataxia research funding and several of our restaurants were happy to host Team Ride Ataxia for a wonderful dinner during each night of the ride. This is an amazing event to be a part of and together we can build awareness for FA and raise funds that are needed to help find a cure.” Several Outback employees also joined the Ride Ataxia cycling team for the trip from Portland to Seattle.

Team Ride Ataxia has set a goal of raising $100,000 towards research for Friedreich's ataxia in 2009. For information about the Ride or to make a donation please visit http://www.rideataxia.org

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
Amy Koepnick
Volunteer, Ride Ataxia
(206) 406-2194
a.koepnick@...

Ronald Bartek
President, Friedreich's Ataxia Research Alliance
(703) 426-1576
info@...

Michael Parent
Executive Director, National Ataxia Foundation
(763) 553-0020
mike@...

Kyle Bryant
Founder, Ride Ataxia
(916) 203-3238
kyle@...

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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