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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.


Mayor of the City of Tampa Proclaims September 25 - Ataxia Awareness Day

Ataxia advocacy groups and communities around the world are preparing for the upcoming International Ataxia Awareness Day on September 25 with events to increase public awareness about ataxia and raise funds to support research into treatments for the disease. City of Tampa Mayor, Pam Iorio, recognized this important day by issuing a proclamation to declare Ataxia Awareness Day in the City of Tampa, Florida and encouraging Tampa citizens to support people with ataxia.

Read More: Mayor of the City of Tampa Proclaims September 25 - Ataxia Awareness Day

Family united as kids work to find cure for sister's disease

As the youngest of four kids in this close-knit Hinsdale family, 16-year-old Joanna Lagedrost knew her sister, Sarah, coveted a prestigious clinical research gig in Philadelphia for a year before starting medical school.

"I got her the job," Joanna says matter-of-factly, a slight smile accompanying her dry wit. "I asked her to pay me the small sum of $50 and she still hasn't ponied up the cash."

Enrolled in the University of Michigan Medical School next year, Sarah says she'd rather repay her debt to her little sister by helping find a cure for Friedreich's ataxia, the devastating, progressive disease that threatens Joanna's life and has no cure or reliably effective treatment.

"I'm obviously very motivated because of my sister," says Sarah, 22, a study coordinator for Dr. David Lynch's Friedrich's ataxia research at the Children's Hospital of Philadelphia. "I tell her I'll help her eventually."

Friedrich's ataxia is an inherited disease that attacks the nervous system and weakens muscles. Symptoms usually appear during childhood and grow worse, often landing teenagers in wheelchairs. It can damage the heart and sometimes kill patients in early adulthood.

Read More: Family united as kids work to find cure for sister's disease

Forrest Sawyer adds his Voice to Non-Profit Cause

Santa Barbara, CA -- World-renowned, award-winning broadcast journalist Forrest Sawyer will add his voice to an awareness-raising campaign for the Friedreich's Ataxia Research Alliance.

Forrest Sawyer worked 11 years with ABC News, where he frequently anchored ABC World News Tonight and Nightline and reported for all ABC News broadcasts. He anchored the award-winning prime-time newsmagazines "Day One" and "Turning Point" He recorded exclusives from all over the globe, and earned numerous awards for his reports and documentaries, including Emmy Awards in 1992, 1993, and 1994.

He left ABC News to become a news anchor for both NBC and its cable counterpart, MSNBC, where he was a regular substitute for Brian Williams as anchor for The News with Brian Williams. He left NBC News in 2005 to become founder and president of Freefall Productions, where he produces documentaries and serves as a media strategist and guest lecturer.

Symposium looks toward cure for ataxias

Tampa, FL — An upcoming  symposium at USF Health will bring together scientists, clinicians and patients to discuss promising new research for Friedreich’s ataxia and other ataxias, a group of degenerative diseases of the nervous system that adversely affect balance, coordination and movement.

“Understanding Energy for a Cure” will be held 6:15 to 8 p.m. on Thursday, August 27, in Room 1013 at the Morsani Center for Advanced Healthcare at USF Health, 13330 USF Laurel Drive, Tampa, FL 33612. The symposium, sponsored by the Friedreich’s Ataxia Research Alliance (FARA) and the USF Ataxia Research Center (ARC), is free and open to the public.

Dr. Jeffrey Krischer, professor and director of the USF Pediatrics Epidemiology Center, will speak on “The Challenges and Promise of Rare Diseases Research.”  Dr. Krischer is the principal investigator for a major National Institutes of Health data coordinating center that supports the Rare Diseases Clinical Research Network, which is addressing the complexities of diagnosing and treating a variety of rare diseases, including ataxias.

Read More: Symposium looks toward cure for ataxias

Penwest Pharmaceuticals (PPCO) Announces Results of Phase Ib Trial of A0001

Penwest Pharmaceuticals Co. (Nasdaq: PPCO) announced the results of its Phase Ib clinical trial of A0001, a compound the Company is developing for the treatment of mitochondrial diseases. Drs. Amale Hawi, Senior Vice President, Pharmaceutical Development, and Thomas Sciascia, Senior Vice President & Chief Medical Officer, will be presenting these results at the Friedreich's Ataxia Therapeutics Meeting on Friday, July 17, 2009, in Philadelphia, PA.

In the Phase Ib trial, the drug was well tolerated by subjects, and no serious adverse events were reported. There was a dose-dependent increase in exposure approaching steady state within 2-4 days following repeat-dosing, and a maximum tolerated dose was established.

Read More: Penwest Pharmaceuticals (PPCO) Announces Results of Phase Ib Trial of A0001

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