Get the Hydrocephalus Scoop on Capitol Hill for April 2024

Hydrocephalus Association’s Advocacy Update

Hydrocephalus Association Stands in Support of Critical Medical Research

The Hydrocephalus Association joined others in the research community by signing onto a letter circulated by Research!America urging Appropriations leaders (those members of Congress who control the money!) to increase FY2025 funding for the Advanced Research Projects Agency for Health (ARPA-H). You may be thinking “What is ARPA-H and why is it important?” Well, the agency is located within the National Institutes of Health (NIH) and focuses on funding cutting edge research directed at solving specific biomedical problems. The program’s mission differs from the traditional NIH research that focuses primarily on basic science (understanding biological processes of the body). High impact research funded through ARPA-H allows researchers to investigate new patient-centered treatments for those in the chronic-condition community. Click  to review the official letter.

You Did It! We Have New Pediatric and Adult Hydrocephalus Caucus Members

Membership of the Pediatric and Adult Hydrocephalus Caucus has continued to grow! In April, we welcomed 3 new members of Congress. With every additional member, there is increased awareness and support for the hydrocephalus community on the Federal level. Recent Caucus growth was spread geographically. Congresswoman Yadira Caraveo (CO-08) became the first member from Colorado to join. Congresswoman Lori Chavez-DeRemer (OR-05) became the first member from Oregon to join. Lasty, Congressman Seth Magaziner (RI-02) became the second member from Rhode Island to join. Representative Magaziner’s membership means the whole Rhode Island Congressional Delegation will be represented on the Caucus, given Representative Amo’s (RI-01) new membership in March. 

The recent growth underscores the hard work of our advocates from around the country. In October 2023, the Hydrocephalus Caucus had only 13 members. The Caucus total is now at 28 members! This is only the beginning. We have the opportunity to continue this momentum and it starts with YOU!  If you have not already, sig up to be a part of Hydrocephalus Action Network.

You Did It! We Have New Pediatric and Adult Hydrocephalus Caucus Members

Hydrocephalus Association staff has been hard at work collaborating with legislators to push forward our policy priorities for the FY2025 Appropriations Funding cycle. This includes priorities within our coalition, the National Partnership for Pediatric to Adult Care Transition (NPPACT), that seek to address the “care cliff” so many pediatric hydrocephalus patients face when transitioning to the adult healthcare system. 

We have also been hard at work educating congressional leaders on the importance of increased funding for the Congressionally Directed Medical Research Program (CDMRP), which funds many forms of high-impact hydrocephalus research across the country. Our advocacy is crucial given the program’s FY2024 funding cuts. Help us urge lawmakers to support increased CDMRP funding by using this Action Alert.

 

Engage with the Hydrocephalus Action Crew!

Hydrocephalus Advocacy Update happening May 1st

Be sure to visit our awesome Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update TONIGHT  at 7 pm eastern. If you haven’t signed up yet, click here to register.

July 25-27 18th National Conference on Hydrocephalus – HA CONNECT   

HA CONNECT, the world’s largest conference on Hydrocephalus, takes place this July in Tampa, Florida. Come get insights into living our best lives with hydrocephalus through interactive sessions, expert speakers, evening events & more! 

Visit hydrocephalusconference.org to learn more and register today!

 

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