MINNEAPOLIS--(BUSINESS WIRE)--Today the National Ataxia Foundation (NAF) partnered with members of Congress to host an informational meeting for legislators, their staff and other interested parties to provide education regarding Spinocerebellar Ataxia (SCA), a group of rare and debilitating hereditary neurodegenerative diseases that frequently impact multiple family members at the same time, with no cure or FDA-approved treatment.
"Today, we were at the Capitol to talk about Spinocerebellar Ataxia (SCA) and the urgent need for treatments for those living with the disease. Rare diseases like SCA face tough challenges, especially in clinical trials, which means we need the FDA to be flexible when reviewing drug applications for new treatments," said Andrew Rosen, CEO of the National Ataxia Foundation. "Our main goal was to educate Congress about SCA and emphasize how crucial research is for finding a treatment."
Bill Nye, “The Science Guy,” was in attendance to share his personal experiences with ataxia and advocate for ataxia awareness. It’s a genetic condition, which affects a person’s walking, fine motor movements, and overall coordination. Bill’s family’s version of SCA was very recently identified and designated SCA 27B. They have been dealing with this condition for generations.
“Many members of my family have a condition called ‘ataxia,’” said Bill Nye. “People have difficulty getting around, they don’t taxi very well. It affects your fine motor movements, walking, and even swallowing. My family calls our version the 'Darby Glide.’ And, it’s more like falling than gliding. Just the year before last, researchers found the repeating genetic sequence that causes our ataxia. It was a breakthrough, but it’s only a start. The more we know about it, the better we’re all able to handle it,” said Bill Nye.
The session included remarks from Lauren Sormani, who also shared her personal experience living with SCA and the devastating impact of the disease on people under 30 years of age. Attendees also heard from Lauren Moore, PhD, Chief Scientific Officer of the National Ataxia Foundation, who discussed the generational impact SCA has had on her own family. She also underscored the enormous unmet need for treatments faced by families like hers.
The National Ataxia Foundation is committed to continuing the dialogue with members of Congress and their staff to raise awareness about the challenges SCA patients face and to advocate for more research and treatment options.
About NAF
Ataxia is a rare neurological disease affecting tens of thousands of people in the U.S. and many thousands more around the world. It is progressive, affecting a person’s ability to walk, talk, and use fine motor skills. Founded in 1957, NAF is a nonprofit organization whose mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. The Foundation’s vision of a world without Ataxia will be accomplished through its primary programs of funding Ataxia research, providing vital programs and services for Ataxia families, and partnering with pharmaceutical companies in the search for treatments and a cure. NAF works closely with the world’s leading Ataxia researchers, promoting exchanges of ideas and innovation in Ataxia discovery. For more information, visit www.ataxia.org.
