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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.


Promising Clinical Trials Fuel Preparations for "Friedreich's Ataxia Awareness Day" — May 20, 2006

Washington, D.C. — Friedreich's ataxia patients and families have more reason than ever to welcome the approach of "Friedreich's Ataxia Awareness Day" on May 20th. The third Saturday of May is recognized in Congressional and state proclamations and through various events around the country as "Friedreich's Ataxia Awareness Day." 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. Now, only ten years later, there is increasing conviction that treatments will soon be developed for Friedreich's ataxia and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson's, Huntington's, Alzheimer's, ALS and a number of rarer diseases as well.

Fundraisers party to help Friedreich's Ataxia group

The Van Schoick family is hosting a party from 8 to 11:30 p.m., Saturday to raise funds for the research of Friedreich's Ataxia. The party is at 1001 Hammond Creek Trail, Bogart.

Live music will be provided, along with raffles, dancing, door prizes, food, beer and wine. Casual dress is recommended.

Friedreich's Ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. "Ataxia," which refers to coordination problems, occurs in many different diseases. In Friedreich's Ataxia, ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs.

Read More: Fundraisers party to help Friedreich's Ataxia group

Friedreich's Ataxia Research Alliance (FARA) Awards Edison Pharmaceuticals $3 Million Development Grant

Washington, D.C. — The Friedreich's Ataxia Research Alliance (FARA) has awarded a $3 million grant to Edison Pharmaceuticals to advance the development of EPI-A0001 for the treatment of Friedreich's ataxia. While continuing to support Friedreich's ataxia research intended to discover potential therapeutic approaches, FARA, with this new grant, demonstrates its additional focus on translating such discoveries into therapeutic initiatives — moving from drug discovery to drug development. FARA's board sees this new step as part of developing a balanced portfolio of both research and development initiatives, and will seek to fund other promising therapeutic programs through a variety of mechanisms.

"The Edison program is compelling in terms of the quality of science, the experience of the team and the promise it shows for treatment in the near term," stated Mr. Ronald Bartek, President of FARA. "FARA's mission is to slow, stop and reverse the damage done by Friedreich's ataxia. This first FARA grant in drug development reflects the fact that we believe scientific research is on the threshold of treatments that will stop this disease in its tracks — even beginning the process of reversal. FARA is proud to have played a role in Edison's kickoff and we are eager to help move its program promptly through the required preclinical stages."

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.

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