Joomla gallery extension by joomlashine.com
Main Promo Images
Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
Participate and stay informed about our fundraising events. Take part in our Facebook community with FA patients, relatives, researchers and friends from all around the world!
Dr. Payne's research moves forward efforts toward an approach to frataxin protein replacement, specifically, this grant will support determining the best molecule and optimizing conditions for expression and purification of the protein his group is developing, called TAT-Frataxin to move forward into preclinical development. Dr. Cortopassi's grant allows him to utilize a recently developed assay to screen thousands of compounds for their positive effect on mitochondrial function compromised by deficiencies of frataxin, the protein that is dramatically reduced in individuals with Friedreich's ataxia. Dr. Napierala's proposal aims to identify a biomarker that might be helpful in evaluating the effectiveness of therapeutic approaches by studying microRNAs, molecules that regulate the activity of genes. He hopes to reveal how abnormalities in microRNAs affect the activity of genes which are responsible for the localization and amount of iron in neuronal cells of patients with Friedreich's ataxia and uncover the pattern of detectable microRNA molecules that is specific to FRDA, essentially a “microRNA signature”.
These three research projects were selected from fourteen excellent applications that were peer-reviewed and then ranked by FARA and NAF scientific advisors. The Kyle Bryant Translational Research Award was established in honor of Kyle Bryant, the courageous young man who has Friedreich's ataxia and formed Ride Ataxia. Ride Ataxia has helped increase awareness regarding FA and raise invaluable research funds for FA research. The Ride allows motivated individuals to experience and advance the fight against this debilitating disease. In 2009, Ride Ataxia III began in Portland, OR and ended in Seattle, WA at the 52nd NAF annual membership meeting. Bryant and Ride Ataxia III teams raised over $260,000 to support the award. NAF and FARA announced at the end of the ride that the two organizations would add sufficient funds to bring the total of the 2009 Kyle Bryant Translational Research Award to $360,000.
FARA Executive Director, Jennifer Farmer added, "The Kyle Bryant Translational Research award is significant because it demonstrates the full collaboration and participation that is essential from the patient, research, and advocacy communities to treat Friedreich's ataxia. We are most grateful to all of the participants and supporters of Ride Ataxia who raised funds and to all of the researchers who submitted applications for this award.” NAF Executive Director Michael Parent commented, "NAF is excited to partner again this year with Ride Ataxia and FARA in supporting vital and promising Friedreich's ataxia research through the Kyle Bryant Translational Research Award. We are truly grateful to all the Ride Ataxia participants, organizers, donors, and sponsors of this event in their efforts to help increase ataxia awareness and support promising Friedreich's ataxia research.”
Ride Ataxia III, launched in Portland, OR on March 16, 2009 with nearly 70 riders, including 6 ataxians. Bryant states, "The third ride was the toughest and most successful so far. We look forward to future challenges as we push the limits and advance research."
Bryant and Ride Ataxia are expanding their efforts to cover both coasts in the coming year, with their first east coast ride on October 25 outside of Philadelphia, Ride Ataxia Northern California on May 15-16, 2010, and Ride Ataxia Southern California in November 2010.
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.
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
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
About Ride Ataxia
The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support, and Empower ataxians by inspiring, motivating, and providing opportunities to develop physical and mental strength. http://www.rideataxia.org
Executive Director, Friedreich's Ataxia Research Alliance
Executive Director, National Ataxia Foundation
Founder, Ride 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!
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:
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:
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.