June | 2025

A Note from NAF's Advocacy Team

YOUR VOICE IS NEEDED!

Why Advocate?

Because every voice—especially the unheard ones—deserves an echo.

Advocacy is more than action—it’s belief in motion. It’s knowing that your voice, your story, your effort, can make the difference.

Sharing your story and what issues are important to you with Members of Congress is how Members understand and prioritize the issues impacting their constituents and country.

NAF will continue to follow policies that impact treatment development and access to care. We will work in coalition with our members and advocacy partners to articulate the impact of policy changes on our members and mission to Members of Congress and Government Agencies.

In this newsletter you will find information on a few important issues we are following and opportunities where you can make your voice heard on these issues. Because it matters!

With Gratitude,

NAF Advocacy Team

Lori Shogren, Community Services Director

Andrew Rosen, CEO

Courtney Clark, Advocacy and Policy Intern

NAF ANNOUNCEMENTS

Welcome Back, Courtney!

We are excited to have Courtney Clark back this year as our Advocacy and Public Policy Intern! Courtney has been busy working with our members and in partnership with FARA’s Advocacy Team on submitting appropriations requests for the continued Inclusion of Hereditary Ataxia in the PRMRP/CDMRP to Members of Congress. This appropriation request has been submitted to 80 Members of Congress. Courtney will be assisting again with the United Against Ataxia Hill Day and other advocacy engagement projects over the summer. Courtney just graduated with her master’s degree in public policy from the University of Wisconsin – Madison. Congratulations and welcome back, Courtney! Connect with Courtney at courtney@ataxia.org

PRMRP/CDMRP Funding Opportunities

Attention Ataxia Researchers and Pharma Partners: the CDMRP just released the PRMRP FY25 funding opportunities, and Hereditary Ataxia is included! Pre-Applications are Due June 6 –

MORE INFORMATION

Rare Disease Congressional Caucus Congressional Briefing

Last month, the Congressional briefing emphasized the lifesaving impact of newborn screening and called for strengthened federal leadership to modernize and sustain the program. Speakers underscored both the urgent need and moral responsibility to act, sharing data and personal stories to illustrate the stakes.

WATCH HERE

TAKE ACTION

Protect CDMRP Funding

Congress has enacted legislation that drastically reduced funding for the Department of Defense Congressionally Directed Medical Research Program (CDMRP). Funding was cut by 57%, from $1.5 billion to $650 million, impacting many critical research programs, including “Hereditary Ataxia.” CDMRP has been instrumental in advancing ataxia research by recommending seventeen grants for funding in the last three years. 

This research program is designed to ensure the health and well-being of the men and women who serve in the Armed Services as well as the American public. Call on Congress to restore this vital funding! You can use this link and personalize your message to express how meaningful the CDMRP is to you and ataxia research!

Urge the FDA to Act on Rare Disease Treatments

NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA). With an estimated 15,000 people in the U.S. affected by SCA, it’s time for decision-makers to understand the impact of this disease—and take action

Sign and share the petition: Urging the FDA to Consider Treatment Options for Rare Diseases, Including SCA.

*Please note: Change.org will prompt you to donate while you are signing the petition. A donation is NOT required to sign. Donations do NOT go to NAF. Simply skip that step to sign without donating.

Protect Medicaid Funding

Threats continue to loom over Medicaid as Congress works its way through the ‘reconciliation’ process, a budget tool that allows Congress to pass certain measures with only a simple majority in the Senate. The House and Senate have agreed on the first initial step, passing a joint budget resolution in mid-April that could result in $880 billion in cuts to energy and healthcare programs. The nonpartisan Congressional Budget Office has found it would be impossible to enact cuts of this magnitude without significantly impacting Medicaid. The hard work now begins, as Committees must put pen to paper on where and how to cut Medicaid.  

Now more than ever, members of Congress need to hear from the community about the risks posed by severe cuts to Medicaid. Visit MDA’s action alert link: MDA.org/Medicaid for sample letters to Congress, advocacy resources, FAQs about Medicaid and more. 

"SKINNY BUDGET" NOTABLES

The President’s Fiscal Year (FY) 2026 “skinny budget” was released by the Office of Management and Budget (OMB) on May 2. This proposal seeks to:

Cut $33 billion (26%) to the Department of Health and Huma Services (HHS).
Cut $28 billion (40%) to the National Institutes for Health (NIH) and cap facilities and administrative (F&A) costs at 15%.
Cut the National Science Foundation (NSF) budget by $5.2 billion, or approximately 57%.
Cut $3.6 billion (39%) from the Centers for Disease Control and Prevention (CDC). Cut the Agency for Healthcare Research and Quality (AHRQ) by $129 million (35%) and end the extramural grant program.

Such an unprecedented loss of funding would set back decades of progress in understanding and treating debilitating brain diseases and disorders. Capping facilities and administrative (F&A) costs at 15% threatens the critical infrastructure that supports research institutions nationwide. More details about these notable aspects of the president’s budget are available here.

The FY26 budget bills are now going through a budget reconciliation process. The budget reconciliation package has passed the House and sent it to the Senate for consideration. The May RDLA Webinar includes a helpful update on the current status of the budget reconciliation package as we await Senate revisions. Watch here.

Contact your Members of Congress to express your funding priorities. Click the links below to find contact information.

Congressional Representatives

Senators

NAF LETTERS OF SUPPORT

NAF has signed on to these letters:

Against harmful policy changes to biomedical research institutions and infrastructure

Newborn Screening Coalition Letter

Neurology Drug Program Funding

NIH Funding

Against Capping F&A Costs in NIH Research Grants

Accelerating Kids’ Access to Care Act

EVENTS

Rare Across America 2025

Rare Across America 2025 is an opportunity to meet with your Members of Congress in their district offices and educate them on the issues that are most important to the rare community. During Rare Across America, advocates have the opportunity to meet with their Representatives in-person at their district office and meet with their Senators virtually via Zoom. The event is flexible. So, you’re welcome to attend just the virtual meetings, just the in-person meeting, or all of the meetings. Additionally, no prior advocacy experience is necessary. There will be training webinars beforehand to help you get familiar with the legislative asks, and you will have a team lead to help organize meetings and guide you through the process. 

Registration is open! If you’re interested in participating, you can find more information on the EveryLife Foundation website .

Save the Date for the United Against Ataxia Hill Day - September 17th!

NAF and FARA are partnering again to hold this year’s annual United Ataxia Hill Day. This Hill Day is the Ataxia community’s opportunity to meet with Members of Congress to raise awareness of Ataxia and the policy issues most important to the Ataxia community. This is a full day virtual event – advocates need to have availability during business hours and access to an internet connected device. Active participation is required – all advocates will be sharing their stories. No experience is necessary – training about how to best share your story and support throughout your experience is provided. Representation of all Ataxia stakeholders is needed – patients, care partners, care providers, researchers, and pharma partners are encouraged to participate. Our goals: accelerate ataxia treatment development, provide robust grant funding opportunities for ataxia researchers, and build vital relationships with Members of Congress. Registration will open in July. More information coming soon!

Check out what a meeting with Members of Congress is like in this Mock Meeting video!

September 25 is International Ataxia Awareness Day!

Help Us Declare September 25 – IAAD from Coast to Coast 

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.

LEARN MORE ABOUT IAAD

DOWNLOAD ADVOCACY TOOLKIT (PDF)

ADVOCACY RESOURCES

These resources by the Rare Disease Legislative Advocates (RDLA) are designed to help rare disease patients, parents, caregivers and others to make their voices heard. If you would like more information about a topic or have tools to share, please contact us at naf@ataxia.org.