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 Friedreich's Ataxia Research Alliance Announces the 2010 Ataxian Athlete Initiative Grant Recipients
- Details
Advances in Ataxia Research Focus of USF-FARA Symposium
- Details
Repligen Receives Additional Research Grants to Support Development of HDAC Inhibitors for Friedreich’s Ataxia and Huntington’s Disease
- Details
Local hikers take to High Peak for FA
- Details
It’s hard to miss Benjamin Wetherby. The lanky 26-year-old Lake George native, with long hair pulled into a ponytail and a scraggly beard, looks as if he has been holed up in the woods for the past year. And, in a sense, he has.
Five days a week, Wetherby works as a caretaker for lodges in Vermont’s Green Mountain National Forest. His jurisdiction: Vermont’s highest peak, Mount Mansfield (4,395 feet).
"I hike it every day for my job," Wetherby said.
Last year, Wetherby hiked the 2,175-mile Appalachian Trail — considered one of backpacking’s most challenging feats and also one of its most prestigious honors. He hiked it in six months, between March and August.
Friedreich's ataxia has no cure, but researchers are working on answers
- Details
When Colleen O’Neal was selected as Student of the Month at Northern Middle School, one of the things her teachers commented on was the joy that she spreads to those around her. What makes that joy remarkable is that it comes in the face of a rare genetic disease causing the 12-year-old Monaghan Twp. girl to slowly lose her ability to walk, to write, to speak clearly — in short, to live life as she knew it.
“There are days when I feel like giving up,” the blue-eyed, blond-haired, soon-to-be seventh-grader said. “Some days I just kind of do give up. I wonder why this had to happen to me. I don’t have any answers.”
Three years ago, after repeated bouts of rapid heart rate and unexplained falls, Colleen was diagnosed with Friedreich’s ataxia — a degenerative disease of the nervous system that is marked by slow, progressive loss of balance, coordination and muscle strength. It can also have potentially life-threatening effects on the heart. There is no cure.
Read More: Friedreich's ataxia has no cure, but researchers are working on answers