‘United Against Ataxia Hill Day’ Is Sept. 29
The third United Against Ataxia Hill Day will take place virtually Sept. 29, an event set aside to heighten awareness and support legislation that affects the ataxia community, including those with Friedreich’s ataxia (FA).
All U.S. residents are invited to participate in the day-long advocacy event, which is a collaboration of the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA). (Registration for the event is now closed.)
This year’s topics include support for a Senate resolution (S.Res 339) that declares Sept. 25 as National Ataxia Awareness Day. The event would call attention to the progressive disorder that affects nerves and muscles, and the need for more research for treatments. While there are therapies that help control FA symptoms, for example, there are none that treat the disease’s underlying cause — a mutation in the FXN gene.
An International Ataxia Awareness Day is held annually on Sept. 25 and is a coordinated effort by individuals and ataxia organizations globally to shed light on the rare disorder. A national awareness day would focus on patients and caregivers, as well as research, in the United States.
There’s also a push to add “hereditary ataxia” to the U.S. Defense Department’s Congressionally Directed Medical Research Program (CDMRP), which funds novel, groundbreaking research and, among other things, supports the next generation of investigators.
The CDMRP manages Congressional research programs that encompass several dozen conditions and areas, such as breast cancer and bone marrow failure. The addition of hereditary ataxia — some types of ataxia are due to other causes, including stroke or head trauma — would bring needed research dollars to the field. Friedreich’s ataxia is an inherited condition.
United Against Ataxia Hill Day supporters also will advocate for passage of the Accelerating Access to Critical Therapies for ALS (S.1813/HR 3537), which would speed therapeutic development for all rare neuromuscular diseases. It also would provide greater access to promising experimental therapies and enhanced coordination of federal government efforts.
The measure is directed primarily toward amyotrophic lateral sclerosis, but some relevant parts also will benefit people with other rare neuromuscular diseases.
Finally, the United Against Ataxia Hill Day event will push for the passage of the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT Act; S. 373/H.R 34472), which aims to include patient perspectives when new treatments or devices are being considered for approval.
“Feel free to post on social media to support these efforts using #AtaxiaHillDay,” the organization wrote on its event page.