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National Ataxia Foundation

Accelerate!

Advocacy

Amplifying the voice of the Ataxia community

SHARE YOUR STORY

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

Become an Ataxia Advocate

Join Our Advocacy Email List

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. 

Past Advocacy Newsletters

Check out our previous Advocacy newsletters. 

Advocacy Training

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.

Help Us Declare IAAD from Coast to Coast

You can help us get 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.

Find Your Local Representative

Want to reach out to your representative about Ataxia initiatives

Congressional Representatives

Senators

Advocacy Events

2022 United Against Ataxia Hill Day – September 21st – www.ataxia.org/2022-hill-day/

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/

Legislative Issues

The following are issues that NAF is following. Click the title of any issue to learn more.

117th Congress

National Ataxia Awareness Day Senate Resolution (S.Res. 339) (2022 Reauthorization)

Fairness in Orphan Drug Exclusivity Act (S.250) 

Access to Genetic Counselor Services Act (H.R. 2144/S.1450)Take Action

Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R. 482/ S. 350) – Take Action 

Cannabidiol and Marihuana Research Expansion Act (S.253) – Passed Senate

Helping Experts Accelerate Rare Treatments (HEART) Act (H.R. 1184) 

Telehealth Modernization Act (S. 368)Ensuring Telehealth Expansion Act (H.R. 341)The Telehealth Extension and Evaluation Act (S. 3593)Telehealth Extension Act of 2021 (H.R. 6202) | Advancing Telehealth Beyond COVID–19 Act of 2021 (H.R. 4040) – Passed House

Speeding Therapy Access Today (STAT) Act (H.R. 1730/S. 670) 

Achieving a Better Life Experience (ABLE) Age Adjustment Act (S. 331)  – Take Action

Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S.373)Take Action

Air Carrier Access Amendments Act (H.R. 1696/S.642)Take Action 

Safe Step Act (H.R. 2163/S. 464)Take Action

Ending the Diagnostic Odyssey Act of 2021 (S.2022)Take Action

Disability Employment Incentive Act (S.630)

Access to Rare Indications Act (H.R 8467)Take Action

The Cures 2.0 Act (H.R. 6000)Take Action

The Conrad State 30 and Physician Access Reauthorization Act (S.1810/H.R.3541)

Direct Care Workforce and Family Caregivers Act (S.2344)  – Take Action

HELP Copays Act (H.R 5801)

Accelerating Kids’ Access to Care Act (S. 1544)Take Action

Precision Medicine for Kids Today Act (H.R. 5989)Take Action

Initiatives

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) (2021, 2020); Senator Chris Murphy (D-CT) (2021); Senator Elizabeth Warren (D-MA) (2020).

Congressionally Directed Medical Research Program (CDMRP)
Friedreich’s Ataxia has been added as an eligible condition under the Peer Review Medical Research Program (PRMRP), a category of the CDMRP, which will allow FA researchers access to a new funding opportunity. This year our goal is to secure continued funding and expand the language to include all Hereditary Ataxias. 

Rare Disease Congressional Caucus 

Neuroscience Congressional Caucus

NIH BRAIN Initiative

Prescription Drug User Fee Act (PDUFA)

The Congressional Caucus for Social Determinants of Health

Advanced Research Projects Agency for Health (ARPA-H)  

Act for ALS  

Share Your Story

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 naf@ataxia.org.  

Advocacy Partners

Contact Us

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 lori@ataxia.org.

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