Advocating for those affected by Ataxia is an important part of our mission at NAF. We are providing community members with more opportunities to get involved. Advocacy activities will expand our partnerships with other organizations and policy makers to help make a difference for people affected by Ataxia. Involvement in advocacy gives us a way to get your stories to policy makers and pharmaceutical companies to grow awareness, accelerate drug development, and ensure access to care and treatment services
Wednesday, September 20, 2023
Thank you to all of our amazing advocates! 164 advocates, from 33 states, educated lawmakers on ataxia during 86 Congressional meetings. They urged action in funding research programs (CDMRP, NIH, & FDA) and legislation which would expedite treatments (Federal Aviation Act Reauthorization, the BENEFIT Act, & the RARE Act). The success of these meetings was a direct result of the time and commitment each of you took to prepare and deliver our important message.
Our individual and combined voices were heard! You helped to raise awareness about the journey of being diagnosed and living with Ataxia, and the search for treatments! It will be your story that your Member thinks of when reviewing future legislation and its impact on research. It is no longer theoretical, now it affects a constituent they know.
The primary ask, the continued inclusion of “Hereditary Ataxia” in the CDMRP/PRMRP, was well received. Appropriations requests were made last spring for FY24, and the Senate has already included the necessary language in their draft report. Offices overwhelmingly expressed support in passing this initiative. Furthermore, most encouraged us to reach out to them when FY25 appropriations requests open. That is huge! It is a clear example of how you are helping to grow ataxia champions on Capitol Hill. Job well done team!
Visit www.ataxia.org/2023hillday to learn more!
Want to stay in-the-know about advocacy issues? We send a quarterly advocacy newsletter and periodic emails to those on our advocacy email list about current legislative issues and things you can do to get involved. To join, become a member of NAF or update your membership information at www.ataxia.org/JoinNAF. Make sure to select “Advocacy” in the Member Interests section.
Check out our previous Advocacy newsletters.
Your voice matters. Patients, their families, and their caregivers have the power to help change public policy to improve the lives of people living with Ataxia. Knowing where to start to get involved with advocacy work can be hard. NAF is here to help! Our United Against Ataxia Hill Day Training video is a great start!
Our advocacy partner, EveryLife Foundation for Rare Diseases, also offers a great resource for learning about the legislative process and how to contact your representatives. Check out their advocacy toolkit.
You can help us get September 25th – International Ataxia Awareness Day (IAAD) declared across the country. Contact your mayor or governor to issue an IAAD Proclamation or your state legislators to pass an IAAD Resolution. The Advocacy Toolkit provides an example proclamation, resolution, and letter to your representative. Contact NAF if you pursue a resolution or proclamation so that we can coordinate individual efforts and highlight those that are obtained.
2024 United Against Ataxia Hill Day – September 25th – www.ataxia.org/2023HillDay/
International Ataxia Awareness Day – www.ataxia.org/international-ataxia-awareness-day/
Rare on the Road Leadership Tour – everylifefoundation.org/rare-on-the-road/
Rare Disease Day – rarediseases.org/rare-disease-day/
Abilities Expo – www.abilities.com/expos/
Rare Across America – rareadvocates.org/voter-voice
Global Genes RARE Patient Advocacy Summit – globalgenes.org/event/patient-summit/
NORD Rare Diseases Summit – rarediseases.org/summit-overview/
Rare Disease Week on Capitol Hill – rarediseases.org/rare-disease-day/
Undiagnosed Day – rareundiagnosed.org/april-29th-is-undiagnosed-rare-disease-day/
The following are issues that NAF is following. Click the title of any issue to learn more.
National Ataxia Awareness Day Resolution
NAF and FARA jointly advocate for a Senate Resolution recognizing September 25 as “National Ataxia Awareness Day.” Designating a National Ataxia Awareness Day highlights the impact of ataxia on individuals and their families within the United States and helps accelerate funding, development, and access to effective treatments. This designation occurs yearly. Prior co-sponsors for the resolution: Senator Cindy Hyde-Smith (R-MS) (2022, 2021, 2020); Senator Debbi Stabenow (D-MI) (2022); Senator Shelley Moore Capito (R-WV) (2022); Senator Chris Murphy (D-CT) (2021); Senator Elizabeth Warren (D-MA) (2020). 2022 National Ataxia Awareness Day Senate Resolution (S.Res. 339)
Congressionally Directed Medical Research Program (CDMRP)
Hereditary Ataxia has been added as an eligible condition under the Peer Review Medical Research Program (PRMRP), a category of the CDMRP, which will allow Hereditary Ataxia researchers access to a new funding opportunity. This year our goal is to secure continued funding to include all Hereditary Ataxias in the CDMRP. The PRMRP program announcements and submission instructions are located at https://cdmrp.health.mil/funding/prmrp.
Let’s show the world the incredible people and families that are a part of the Ataxia community! Please share your story with us to add to our Member Stories page. Email us at email@example.com.
You can help us with our efforts by letting us know about legislative issues that you would like us to be aware of. You can also inform us about national or state legislators that you are in regular contact with or know personally. Email NAF’s Community Program and Services Director, Lori Shogren, at firstname.lastname@example.org.