ADVOCATING FOR THE FUTURE
CDMRP Congressional Briefing March 2024
The Hydrocephalus Association, along with the Congressional Pediatric and Adult Hydrocephalus Caucus, hosted a congressional briefing focusing on the Department of Defense (DOD) Congressionally Directed Medical Research Program's (CDMRP) crucial impact on hydrocephalus research. The event brought in multiple speakers from the patient, policy, and research space. HA President and CEO, Diana Gray, opened the event by giving an overview of hydrocephalus and its impact on our military. Mark Vieth, director of the Defense Health Research Consortium (DHRC), spoke on the history and federal importance of the program while Natasha Buchanan, a Navy mother of a son with hydrocephalus, spoke on the impact of CDMRP-funded research on military families. CDMRP funding recipients, Lora Allemeier, CEO, Cerulean Scientific, and Sascha Lee, CEO, Senseer Health, assessed the long-term hydrocephalus treatment improvements supported by recent grants from the program. Dr. David Limbrick, Chair of the Department of Neurosurgery at Virginia Commonwealth University, spoke about the evolution of hydrocephalus research and facilitated the panel presentation. A highlight of the event was when seven-year-old Zander Buchanan read a statement about living with hydrocephalus and the importance of finding a cure. The event underscored the importance of robust FY 2025 funding for the CDMRP and its correlation to finding a cure for hydrocephalus. Congressional Pediatric and Adult Hydrocephalus Caucus Co-Chair staffers, Afton Cissell (Congressman Doggett) and John McDonough (Congressman Smith), were instrumental in the success of our event..
Congressional Pediatric and Adult Hydrocephalus Caucus Expands to 39 Members
Building Bipartisan Momentum to Drive Change
In 2024, the Congressional Pediatric and Adult Hydrocephalus Caucus grew to 39 dedicated members, reflecting expanding bipartisan support for our mission to advance research, improve treatments, and raise national awareness.
Welcoming New Champions in Congress
Rep. Don Bacon
(NE-02)
Rep. Don Bacon (NE-02) became the first Nebraska representative to join the Caucus. His commitment to bipartisanship and connection to the Omaha WALK to End Hydrocephalus will be a valuable asset to our efforts. We are grateful to advocate Crystal McLaughlin for stewarding our relationship with Rep. Bacon both locally and in joining the Caucus.
Rep. Suzanne Bonamici
(OR-01)
Rep. Suzanne Bonamici (OR-01) is now the second Oregon member of the Caucus. Her support strengthens advocacy efforts for patients receiving care at Oregon Health & Science University (OHSU). Special thanks to Oregon advocates Chase Swearington and Nicole Anderson for their outstanding work in engaging her office.
Rep. Becca Balint
(VT-AL)
Rep. Becca Balint (VT-AL) marks a historic first for Vermont, bringing a strong voice for mental health and disability advocacy to the Caucus. We are grateful to advocate Matt Mulligan, whose outreach was key to this success.
Rep. André Carson
(IN-07)
Rep. André Carson (IN-07) is the former Democratic chair of the Caucus and has returned to represent Indiana. His district includes the IU School of Science’s Hydrocephalus Research Center, a hub of innovation and discovery.
Rep. Jason Crow
(CO-06)
Rep. Jason Crow (CO-06) joined as the third member from Colorado, representing one of the country’s largest WALKs in Denver. His leadership will help further national policy advancements in hydrocephalus care and research.
Rep. Ted Lieu
(CA-36)
Rep. Ted Lieu (CA-36) became the third member from California. Representing Los Angeles—home to the Southern California WALK—he brings strong expertise in health tech policy, including the ethical use of AI in medicine.
Rep. Seth Moulton
(MA-06)
Rep. Seth Moulton (MA-06) is now the first Massachusetts member of the Caucus. A Marine Corps veteran and mental health advocate, he will bring powerful perspective to our cause. Special thanks to local advocates Jennifer Miles and Gabriel Abbott for their essential role in this achievement.
Rep. Lisa McClain
(MI-09)
Rep. Lisa McClain (MI-09) joined as the first Michigan representative on the Caucus. Her involvement reinforces the strength of Michigan’s hydrocephalus community. We appreciate the passionate advocacy of Janay Harris and Emily Sajor, who helped make this possible.
These additions mark significant milestones in our federal advocacy work, building momentum for meaningful legislative progress. Every new member brings us one step closer to a future with improved care, stronger support systems, and—ultimately—a cure.
National Partnership for Pediatric to Adult Care Transition
The National Partnership for Pediatric to Adult Care Transition (NPPACT) is a collaborative coalition co-chaired by Hydrocephalus Association (HA) CEO Diana Gray and Spina Bifida Association (SBA) CEO Sara Struwe. The partnership unites nonprofit patient organizations with a shared goal: to address systemic and policy challenges that hinder the successful transition from pediatric to adult healthcare for individuals with medically complex conditions.
NPPACT Congressional Briefing: Shining a Light on Healthcare Transition Barriers
In June, HA partnered with the Spina Bifida Association, Arthritis Foundation, Tourette Association of America, and other NPPACT members to host a pivotal Capitol Hill briefing titled "Healthcare Transition: A Care Cliff for Pediatric Onset Conditions." This event highlighted the critical gaps in care that many young adults face when aging out of pediatric healthcare systems.
Featured speakers included:
- Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement, EveryLife Foundation for Rare Diseases
- Dr. Erin Teeple, Pediatric and Adult Colorectal Surgeon and Director of the Colorectal Transition Program at Children’s National Hospital
- Domonique Robinson, Patient Advocate living with Spina Bifida and Hydrocephalus
The panel, facilitated by Sara Struwe, Spina Bifida Association CEO, addressed systemic barriers such as inadequate reimbursement models, the absence of transitional coverage, and a limited adult care workforce trained to manage complex pediatric-onset conditions.
The briefing also emphasized the need for federal agencies to assess and improve support structures for healthcare transitions. As a result of sustained advocacy led by HA and NPPACT throughout the month, recommended report language urging the Department of Health and Human Services to evaluate existing programs and policies was successfully included in the proposed FY2025 Senate LHHS Appropriations Bill. This milestone reflects HA’s leadership in shaping policy and championing better outcomes for individuals with hydrocephalus and other lifelong conditions.
Rally for Medical Research
Each year, the Hydrocephalus Association joins a national coalition of medical research advocates for the Rally for Medical Research in Washington, D.C. This annual event brings together patients, caregivers, researchers, and clinicians from across the country to meet with members of Congress and advocate for robust funding for the National Institutes of Health (NIH).
At this year’s rally, HA staff and 12 dedicated hydrocephalus advocates stood alongside representatives from a wide range of medical communities. Amanda Garzon, HA’s Chief Operations Officer, delivered remarks at the opening reception alongside Senator Dick Durbin and former NIH Director Dr. Monica M. Bertagnolli. Her message emphasized the importance of the patient voice in shaping policy.
Together, Rally participants met with more than 50 congressional offices, delivering a clear and unified message: continued investment in medical research is essential to developing new treatments, improving quality of life, and driving progress toward cures.
We would like to extend gratitude to our advocates who represented the hydrocephalus community in these meetings: Lindsay Caron Epstein (CO/FL), Sharisha Davis and her husband (GA), Jackie Donovan (MD), Rebecca Donovan (MD), Holling Dwiggins (DC), Shaylyn Kelly (MD), Rich Mulholland (OR), Ken Schoppmann (DC), Alex Trujillo (FL), and Amir Yazdani (VA).
