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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.

Friedreich's Ataxia Research Alliance (FARA) Joins with MDA and Seek A Miracle in Fighting Friedreich’s Ataxia

Washington, D.C. — The Friedreich's Ataxia Research Alliance (FARA) has awarded a $300,000 grant to Edison Pharmaceuticals in the first step of an ongoing collaboration with the Muscular Dystrophy Association (MDA), and Seek A Miracle (SAM), intended to move promising compounds for the treatment of neuromuscular diseases from the lab to the clinic.

The initial FARA grant is to fund the pre-clinical toxicology and pharmacology on clinical candidates developed by Guy Miller, MD, PhD and the team of Edison Pharmaceuticals of San Jose, California.

"FARA is very excited to work with MDA and SAM on this project," said Ron Bartek, FARA’s president. "We believe these compounds show real promise in addressing the respiratory chain defect present in Friedreich’s ataxia patients. Our hope is that clinical candidates such as Edison’s EPI-A0001 will form the basis of a first-line treatment in arresting the progression of FA."

LSU Researcher Receives NIH Grant to Study Causes of Friedreich's Ataxia

New Orleans — Louisiana State University Health Sciences Center researcher Ed Grabczyk has been awarded a $485,000 grant from the National Institutes of Health for a three-year study designed to better understand the mechanisms causing Friedreich’s ataxia (FRDA) and provide clues for possible therapies.

Mr. Grabczyk’s research is entitled "Mechanisms Contributing to Frataxin Deficiency." He plans to examine Friedreich’s ataxia at a basic molecular level focusing on how the FRDA repeat expansion lowers expression of the frataxin protein which is believed to be responsible for FRDA. His hypothesis is that at the molecular level transcription instigates dynamic structure formation within the GAA-TTC repeat that leads to reduced mRNA expression through multiple potential pathways.

"Exciting Scientific Advances" Trigger Hope on "Friedreich's Ataxia Awareness Day" — May 21, 2005

Washington, D.C. — Although there is no effective treatment or cure available, Friedreich's Ataxia patients and families have more reason for real hope as they prepare events around the country for "Friedreich's Ataxia Awareness Day" on May 21st. The day is recognized in a Congressional proclamation and through various events around the country. Friedreich's Ataxia is a fatal, hereditary, degenerative, neurological disease that typically first becomes noticeable when children are in elementary school.

"An extraordinary explosion of research insights has followed the identification of the Friedreich's Ataxia gene in 1996," said U.S. Rep John A. Boehner of Ohio in introducing the Congressional proclamation. We see "powerful evidence of the increasing hope and determination to conquer Friedreich's Ataxia. There is also a growing conviction that treatments can and will be developed for this disease and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson's, Huntington's and Alzheimer's."

Friedreich’s Ataxia Research Alliance Research Grants Reach $2-million Mark

Arlington, Virginia — The Friedeich’s Ataxia Research Alliance (FARA) has awarded about $1 million in research grants in 2004, bringing the total grants awarded to $2 million since FARA was established in 1998. This research is targeted at scientific efforts to find ways to slow, stop and reverse progression of Friedreich’s ataxia.

"As a result of the generosity of donors, the tireless commitment of the people conducting fundraisers, co-funding by Seek A Miracle / MDA, and the increasing tempo of Friedreich’s ataxia scientific developments, we are making exciting progress in a number of promising research areas," said FARA president Ron Bartek. "We’re seeing marvelous advances in the scientific community."

Researcher Targets DNA Replication for Better Understanding of Friedreich’s Ataxia

Chicago, Illinois — Maria Krasilnikova, a research assistant professor at University of Illinois at Chicago, is studying the underlying DNA replication of Friedreich’s Ataxia to help in the search for new drugs to treat the disorder.

In Friedreich’s Ataxia, the DNA sequence multiplies out of control. Friedreich’s is the most commonly inherited form of ataxia and causes progressive damage to the nervous system. It causes muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; scoliosis (curvature of the spine), diabetes; and a life-threatening heart condition. Average life expectancy is reduced to early adulthood.

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