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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.


Repligen Announces Identification of Drug Target for Friedreich’s Ataxia

WALTHAM, MA – Repligen Corporation (NASDAQ: RGEN) reported today publication of research that identifies histone deacetylase 3 (HDAC 3) as an important enzyme target for therapeutic intervention in Friedreich’s ataxia.  These research findings confirm the drug target of the HDAC inhibitors that Repligen is currently developing for the treatment of inherited neurodegenerative diseases such as Friedreich's ataxia.  The study entitled “Chemical Probes Identify a Role for Histone Deacetylase 3 in Friedreich’s Ataxia Gene Silencing” published today in the journal Chemistry & Biology (volume 16, 980–989, September 25, 2009) was conducted in collaboration with scientists at The Scripps Research Institute.   
 
“Prior research indicated that HDAC enzymes play an important role in silencing the gene implicated in Friedreich’s ataxia,” stated Walther C. Herlihy, President and Chief Executive Officer of Repligen Corporation.  “Identification of the involvement of HDAC 3 is an important step in developing a specific drug for Friedreich’s ataxia without the potential toxicities associated with broad-acting HDAC inhibitors.  There are more than 15,000 patients worldwide with Friedreich's ataxia with no therapies available for treatment.”

Read More: Repligen Announces Identification of Drug Target for Friedreich’s Ataxia

Outback Steakhouse and Local Non-Profit Ride for a Cure, support clinic at Children's Hospital of Philadelphia

Philadelphia, PA. — Friedreich’ s Ataxia Research Alliance (FARA) and Outback Steakhouse restaurants of PA are proud to a nnounce registration for Ride Ataxia- Philadelphia, a one-day cycling event scheduled for Sunday October, 25th, 2009.

The cycling event and Family Fall Festival begins a nd ends at Limerick County Park in Royersford, PA. 10-, 25- and 50-mile routes will co ver scenic country roads and will be supported with stocked rest stops, sag vehicles and roving support. Riders can register and fundraise on line either as individuals or in t eams at www.rideataxia.org/Philly . Registration includes the best event food around pr ovided by the Outback Steakhouse, Carrabba’s Italian Grill and Bonefish Grill. Fall f estival activities include a ¾ mile paved loop for a kids ride as well as face painting and F all themed games and crafts. Ride Ataxia-Philadelphia continues a tradition of pe rsonal triumph and physical achievement begun by Kyle Bryant, a Friedreich’s At axia patient, who refused to give up cycling as the devastating effects of the disease b egan to severely affect his balance. Since then, Kyle Bryant and the Ride Ataxia cycling team have traveled 3,300 miles in the past three years, raising invaluable ataxia awarenes s and over $700,000 in research funds.

Read More: Outback Steakhouse and Local Non-Profit Ride for a Cure, support clinic at Children's Hospital of Philadelphia

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.

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