The Hydrocephalus Scoop on Capitol Hill — August 2026
Advocacy Update: July Actions and August Opportunities
The Hydrocephalus Association continues to press Congress and the federal government to protect the policies, programs, and research that move our mission forward. On July 13, we submitted comments in strong opposition to the proposed rule, Regulation for Federal Financial Assistance (OMB-2026-0034), because it would make federal grantmaking less stable and create serious risks for hydrocephalus research, clinical progress, and community support.
Federal funding is a lifeline for the hydrocephalus community. It supports scientific discovery, clinical studies, workforce development, and the programs that help people living with hydrocephalus and their caregivers navigate the daily realities of this condition. We urged the White House Office of Management and Budget (OMB) to withdraw or substantially revise the rule to preserve stable, science-based grantmaking and protect the continuity of long-term research.
Why We Are Fighting This Rule
For hydrocephalus research, stable funding matters. Progress depends on sustained federal investment, reliable grant pathways, and the ability of researchers to plan multi-year work without disruption or political interference.
If federal funding becomes less predictable, the result will be fewer applications, delayed awards, weakened research projects, and slower progress toward better treatments and a cure. We will keep you updated on this important regulation and may need your help in the future convincing Congress that they need to rewrite the rules to protect federal research funding.
Congress Is Back In Your Community
We have been actively working to ensure that hydrocephalus research and funding programs are protected and receive more congressional funding in the next fiscal year. Congress has moved to pass funding bills that will keep the government running past the election. This is good news as we won’t need to worry about a government shutdown this fall. However, we still need to remain vigilant and continue to ask our members of Congress to fully fund the CDMRP and medical research funding at the National Institutes of Health.
As Congress heads home for the August congressional work period, now is an excellent time to meet with your members of Congress in their district offices or at local events. These conversations are one of the most effective ways to educate lawmakers about hydrocephalus and the policy priorities that matter to our community.
The Hydrocephalus Association can provide talking points, background materials, and guidance to help you prepare for an effective meeting. If you’re interested in meeting with your members of Congress, email Joe at Joe@hydroassoc.org to get involved.
HA CONNECT Energized Our Community
HA CONNECT 26 was a great opportunity for advocates, families, and supporters to come together, share experiences, and strengthen our collective voice in Indianapolis this summer. The conference helped advance our mission by building connections, deepening understanding, and energizing advocates who are working every day to move hydrocephalus research and policy forward. Let’s keep that momentum going and continue to advocate for hydrocephalus research and programs!
OPPORTUNITIES TO ENGAGE
Looking Ahead to September
September is Hydrocephalus Awareness Month, and August is the perfect time to educate members of Congress about its importance. We encourage advocates to ask their lawmakers to recognize Hydrocephalus Awareness Month and make public statements supporting World Hydrocephalus Awareness Day on September 20.
These actions help raise visibility, build momentum, and show elected officials that hydrocephalus deserves attention and action. Together, we can strengthen awareness, elevate our community, and push for the progress patients and families need.
Ready to get involved? Email Joe at Joe@hydroassoc.org for resources and guidance on advocating for Hydrocephalus Awareness Month.
Please join us on Wednesday, September 9th at 7pm Eastern for our next Hydrocephalus Action Network Advocate Call.
In collaboration with the International Society for Pediatric Neurosurgery (ISPN), this special World Hydrocephalus Day webinar will bring together experts for an informative discussion.
In this webinar, Dr. Catherine Stephan will give an overview of what neuropsychological testing is, why it is used, and how it helps clinicians understand changes in brain function for people living with hydrocephalus.