Looking Back at Key Accomplishments in 2024
2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.
Our first grassroots advocates meetup of 2025 will take place at 7:00 pm EST on January 8th. Government moves quickly. The new administration and Congress will hit the ground running at the beginning of 2025. Advocates must be ready to act.
How Advocates Amplified their Voice in 2024:
Grassroots advocates participated in over 100 virtual in-person and virtual meetings with congressional staff and members of Congress. These opportunities allowed patients and caregivers to expand on the most prominent challenges for those in our community and how members of Congress can support them. Meetings took place throughout a variety of events. Advocates were able to meet with district offices to educate congressional staff on all-things hydrocephalus while Congress was out of session. Additionally, the Hydrocephalus Association was able to bring advocates to two different advocacy events on Capitol Hill.
In February, hydrocephalus advocates joined hundreds in the rare disease community to participate in Rare Disease Advocacy week. Patients met with multiple congressional offices to educate lawmakers on legislation impacting rare disease patients throughout the country.
In September, hydrocephalus advocates participated in the Rally for Medical Research Hill Day on Capitol Hill to educate congressional offices on the importance of federal funding for the National Institutes of Health (NIH). Patient and caregiver advocates highlighted recent NIH hydrocephalus grants and their impact on the hydrocephalus community.
Hydrocephalus Caucus Success:
At the beginning of 2024, the Congressional Pediatric and Adult Hydrocephalus Caucus contained only 11 members of Congress. At this time, we have 39 members of Congress representing an increase of 28 new members in 2024! The Caucus growth is a direct impact of the continuous efforts of grassroots advocates. Given the retirement of various Congresspeople, we will start with 33 Caucus members in 2025. This means there is still much work to be done!
Congressional Events:
The Hydrocephalus Association hosted two congressional briefings that attracted over 80 congressional staffers. The first briefing detailed the importance of the Congressionally Directed Medical Research Program (CDMRP) for federal hydrocephalus research. The event brought in recent CDMRP grantees to speak on the impact of their research for hydrocephalus patients. Speakers also underscored the importance of program funding increases for 2025.
The Hydrocephalus Association partnered with two other patient organizations in the second congressional briefing to educate congressional staff on the barriers present for adult patients with complex healthcare as they transition to the adult healthcare system. The briefing brought in various experts, providers, and patients to expand on their expertise and personal connections to the topic. The event underscored appropriations report language that would assess government efforts on pediatric to adult healthcare transition.
Federal Research Accomplishments:
Hydrocephalus has maintained eligibility in the Congressionally Directed Medical Research Program (CDMRP) in 2025 thanks to our partners in Senator Patty Murray’s (WA) office. Once the final Defense Appropriations bill is passed, researchers will have the opportunity to apply for new federal funding opportunities in 2025.
During the 2024’s CDMRP grant cycle, Leandro Castaneyra-Ruiz (Children’s Hospital of Orange County) received a $1.57 million grant from the federal program.
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