07/27/2026
HDSA Advocacy Campaigns
Creating Awareness
Every August your U.S. Representative and two U.S. Senators come home to spend time with their constituents. This is an opportunity for HDSA advocates to schedule meetings with them or their staff to share the HDSA priority legislation and ask them to co-sponsor these bills.
To be successful, this campaign needs you! In South Carolina, we especially need constituents from District 5- Ralph Norman - and District 6 - Jim Clyburn. Our state captain is Joyce Sireno. If you are interested in learning more about how you can be involved, please contact Joyce at [email protected] She will schedule and organize the meetings with our senators.
HDSA has created two online training modules to support advocates who are interested in participating in this annual event. Upon reviewing the modules advocates will
* Understand how to talk about the legislation HDSA is supporting https://www.votervoice.net/BroadcastLinks/1KFYRGR_bimPMZNAAEre9A and
* Become acquainted with the resources to ensure your success https://www.votervoice.net/BroadcastLinks/YAgQRy9FLZguMIi8Qu1rWg .
Driving the Conversation
At the HDSA Annual Convention, we shared a simple but powerful message: when we create awareness and drive the conversation, we can influence policy.
Our recent advocacy efforts with the FDA demonstrate what is possible when the Huntington's disease community speaks with one voice. Together, our community generated more than 40,000 petition signatures, sent 12,000 emails to Members of Congress, participated in 16 virtual meetings between HDSA Advocacy Leaders and congressional offices, held 48 in-person meetings during Rare Disease Week, and helped secure 20 letters from Members of Congress to the FDA urging greater attention to the needs of the Huntington's disease community. During this campaign, leadership at the FDA changed with the resignation of FDA Commissioner Makary and the dismissal of Center for Biologics Evaluation and Research director Dr. Prasad.
We challenged Convention attendees to put this same advocacy effort into action. During the session, participants were invited to take out their phones and contact their Members of Congress right from their seats, urging them to support the inclusion of Huntington's disease in the Act for ALS reauthorization.
The response was inspiring. Convention participants made over 300 calls to congressional offices during the session, demonstrating the power of immediate, collective action. Every call helps educate policymakers, builds momentum for legislative change, and reinforces that the Huntington's disease community is engaged, organized, and determined to improve the lives of individuals and families affected by HD.
Go to https://www.votervoice.net/HDSA/Campaigns/138051/Respond to view a script and phone numbers to call your Congressional members.
Advocacy doesn't begin and end in Washington, D.C. - it begins with each of us. When we raise our voices together, we create awareness, shape the conversation, and influence the policies that matter most to our community.
Let's Celebrate
The House Appropriations Committee advanced its Fiscal Year (FY) 2027 Labor, HHS, Education, and Related Agencies Appropriations Act to include $47.3 billion for NIH, a slight increase over the FY 2026 level and a rejection of the President’s proposed $5 billion cut for the agency. Also included, a $6 million increase for NIH’s BRAIN Initiative.
Moving the Ball
Legislation
Representatives Schakowsky and Dingell recently introduced the Home and Community-Based Services (HCBS) Access Act. This legislation aims to expand access to home and community-based care for people with disabilities and older adults. Representatives Dingell and Matsui also introduced the Long-Term Care Workforce Support Act, which seeks to increase the number of direct care professionals, improving their compensation and treatment, with an emphasis on rural impact. https://www.votervoice.net/BroadcastLinks/wiGZwIhZVEyAgKmM9iMq6Q.
FAIR Act Introduced: Representative Pete Sessions recently introduced the Fast-tracking Approval for Innovative Rare Disease Therapies (FAIR) Act (H.R.7953), which aims to accelerate patient access to innovative, life-threatening disease medicines. This legislation would allow the FDA to approve drugs within 30 days if already approved by trusted international regulators. https://www.votervoice.net/BroadcastLinks/rMR6TOlJ_Y960TIzbaaJuQ
Comments and Support Letters
HDSA continued to advocate for the Huntington's disease community by submitting comments to several federal government dockets, including those on the Priority Review Voucher program, how HDSA is using information from the 2024 Externally Led Patient-Focused Drug Development meeting, and a proposed Office of Management and Budget (OMB) rule that would replace peer review of research grants with reviews by political appointees. You can read the comments
https://www.votervoice.net/HDSA/Campaigns/138729/Respond Through its participation in coalitions, HDSA signed the following letters sent to Congressional leaders and the Trump administration.
* Letter to Congress supporting the Ensuring Excellence in Mental Health Act (S.3402/H.R.8487) that would create the infrastructure required to sustain and expand access to Certified Community Behavioral Health Centers nationwide. This letter was circulated by the Mental Health Liaison Group.
* Letter to Congress opposing further Medicaid cuts in the reconciliation process. This letter was circulated by the Consortium for Constituents with Disabilities.
* Letter to CMS supporting the proposed prior authorization decision timeframes and public reporting requirements, which represent meaningful steps toward greater accountability and transparency in the prior authorization process. This letter was circulated by the Movement Disorders Coalition.
Your Voice Can Make a Difference
Please support this work by sharing with colleagues, family, and friends. To continue to receive communications about issues that support improving the lives of families affected by Huntington’s disease, visit https://www.votervoice.net/BroadcastLinks/5prZam2Pmmv1xvJROzbweg
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
