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FARAFARA Cure FA

 

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.

 

The Mothers and Daughters of The Cake Eaters

Having always been an optimistic person, I guess there are perks to everything. My family would never have experienced meeting and helping Mary Stuart Masterson with her film, The Cake Eaters if it hadn't been for living with the disease Friedreich's Ataxia. The communication with Mary Stuart happened quickly and, at first, I did not realize who I was speaking to even though I know many of her staring movies like Fried Green Tomatoes and my favorite Benny and Joon . You don't expect a movie star to contact you directly. After a few emails, we were off to New York to meet Mary Stuart, actor Jeremy Davidson, her brother Peter Masterson and Jesse Scolaro for interviews to assist the cast and crew with their research for Friedreich's Ataxia (FA).

Living with Friedreich's Ataxia, my daughters Sam and Alex Bode take on each day of their lives with unbelievable courage and many challenges. They overcome things that we too often take for granted. I don't mean just walking, I mean simply trying to maneuver a glass of water to their mouth, trying to reach for a fork or trying to get enough breath for a whole sentence. And doing these intricate daily tasks take up all of their energy. You can only imagine how empowering it was for my girls to work on a movie project like this. And as a mother, how rewarding it was for me to see them contribute to something and feel great about it. It also helps that Mary Stuart Masterson turned out to be one of the most kind and compassionate people we have been graced to meet! Her insight and patience was so genuine! We had a blast spending time with them while they interviewed us and asked some pretty personal questions.

Read More: The Mothers and Daughters of The Cake Eaters

Repligen Licenses Potential Treatment for Friedreich's Ataxia from The Scripps Research Institute

Springfield, VA — Repligen Corporation (NASDAQ: RGEN) announced today that it has entered into an exclusive commercial license with The Scripps Research Institute for intellectual property covering compounds, which may have utility in treating Friedreich's ataxia. The Scripps research was funded in part by grants from the Friedreich's Ataxia Research Alliance (FARA).

Friedreich's ataxia is an inherited neurodegenerative disease that causes severe and progressive damage to both the nerve tissue in the spinal cord and muscle tissue, especially of the arms,legs and heart. Research in patient cells and mice indicates that a class of compounds called Histone Deacetylase (HDAC) inhibitors increase production of the frataxin protein, which suggests potential utility of these compounds in slowing or stopping progression of the disease. There is currently no treatment or cure for Friedreich's ataxia.

Read more: Repligen Licenses Potential Treatment for Friedreich's Ataxia from The Scripps Research Institute

Cross-Country Cyclist with Rare Neuromuscular Disorder to Pedal through Phoenix

Kyle Bryant is in day 9 of a 2,800-mile bike ride to raise awareness and research funds to help find a cure for the rare neuromuscular disorder, Friedreich's ataxia (FA), with which he and thousands of other Americans are affected.

Bryant launched his courageous trip from The Scripps Research Institute in La Jolla, California, on January 22 — his ears ringing with applause and shouts of encouragement from appreciative FA patients and the Scripps scientists making encouraging progress toward treatments and a cure for his disease.

Kyle plans to spend tomorrow, day 10 of his ride, in Phoenix, where a number of families are affected with Friedreich's ataxia and with other forms of ataxia as well. Bryant looks to finish his ride in Memphis, Tennessee, in time to help open the annual meeting of the National Ataxia Foundation on March 22nd.

"I'm one of the lucky ones that can still get around, but there are a lot of people that are affected by this disease," says Bryant. "I'm trying to do something extreme to raise awareness, just because no one knows about it."

Read more: Cross-Country Cyclist with Rare Neuromuscular Disorder to Pedal through Phoenix

International Friedreich's Ataxia Conference at NIH Highlights Promising Research, Clinical Trials and the Importance of Public-Private Partnership

The Friedreich's Ataxia Research Alliance (FARA) and the National Institutes of Health (NIH) have just hosted the Third International Friedreich's Ataxia (FRDA) Scientific Conference at the NIH in Bethesda, Maryland, highlighting and advancing the exciting research leading now to a variety of clinical trials that show promise of developing treatments for this devastating disorder.

National Institute of Neurological Disorders and Stroke (NINDS) Director Story Landis, in her remarks opening the conference, said there is a "palpable sense of energy, excitement, and enthusiasm" over the scientific progress made since the FRDA gene was discovered 10 years ago. Nearly 150 leading Friedreich's ataxia scientists from around the world discussed their new insights and findings during four days of meetings at the NIH, November 9-12. The public-private partnership underlying this progress and highlighted by the conference involved the NIH, patient advocacy foundations, pharmaceutical and biotechnology industry representatives, and the scientists from academic institutions.

The government sponsors of the conference were the NIH Office of Rare Diseases (NIH/ORD) and NINDS. NIH/ORD was represented at the conference by Dr. Giovanna Spinella. NINDS was represented by its Director and a number of NINDS scientists long involved in advancing the therapeutic approaches examined during this meeting.

Read more: International Friedreich's Ataxia Conference at NIH Highlights Promising Research, Clinical Trials...

Frank Wootten to Cycle Coast-to-Coast to Raise Awareness and Research Money for His Son's Friedreich's Ataxia

Frank Wootten of Hooksett, NH will ride his bicycle from St. Augustine, FL to the Scripps Research Institute in La Jolla, CA next month to raise awareness and research funds to help find a cure for his son’s Friedreich's Ataxia, a devastating neurodegenerative disease. Mr. Wootten's son, Thomas, 28, is confined to a wheelchair. Thomas, nicknamed 'TK' like his grandfather and great-grandfather before him, lives with Friedreich's and his service dog James Bond in Columbia, SC.

"I am hoping that through my cycling I can help my son and many others who suffer from this horrible disorder," said Mr. Wootten.

Read more: Frank Wootten to Cycle Coast-to-Coast to Raise Awareness and Research Money for His Son's...
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