ADVOCATING FOR THE FUTURE
Hydrocephalus Capitol Hill Day
In January, the Hydrocephalus Association brought together over 50 dedicated volunteer leaders from the hydrocephalus community to advocate for legislative change on Capitol Hill. Participants included the WALK to End Hydrocephalus Chairs, Community Network Leaders, patients, and caregivers, all uniting under the goal of raising awareness for the condition.
The event, being the first hydrocephalus-specific hill day since 2021, gave advocates the opportunity to meet with congressional representatives to address pressing issues facing the community and emphasize the importance of federal funding for life-saving research and healthcare. For each meeting, attendees focused on protecting funding for Medicaid, biomedical research, Medicare, telehealth access, and the Pediatric and Adult Hydrocephalus Congressional Caucus.
The powerful stories shared to elected Representatives on this day helped amplify the community’s voice and empowered attendees to continue in their advocacy work. We are grateful for their commitment and passion in representing the community and fighting for meaningful change.
Advancing Research Through Federal Advocacy
In 2025, the Hydrocephalus Association continued its efforts to protect and expand federal investments in hydrocephalus research. Following significant reductions to the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP), HA advocated for the restoration of critical funding that supports innovative research and treatment development for conditions affecting service members, veterans, and civilians, including hydrocephalus.
A major milestone came with the introduction of the Medical Research for Our Troops Act, bipartisan legislation aimed at restoring funding for the CDMRP. The Hydrocephalus Association worked closely with members of the Congressional Pediatric and Adult Hydrocephalus Caucus and other congressional champions to elevate the importance of sustained federal research investment.
Federal funding through programs like the CDMRP has played a vital role in advancing hydrocephalus research, helping drive breakthroughs that bring the community closer to improved treatments and, ultimately, a cure. HA remains committed to ensuring that researchers have the resources needed to pursue innovative discoveries and improve outcomes for individuals and families affected by hydrocephalus.