A packed room of more than 60 staff members from Congressional offices, and members of the hydrocephalus patient community, took part in the Hydrocephalus Caucus Briefing on Oct. 17th. The briefing, hosted by the Hydrocephalus Association and the Pediatric Hydrocephalus Foundation (PHF), explored the impact hydrocephalus has on patients, caregivers, and members of the military, and how members of Congress can support families impacted by this condition. The briefing was supported by Congressmen Christopher H. Smith and Lloyd Doggett, Co-Chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus.
Michael Illions, PHF Vice President, shared the story of his 14-year-old son Cole, who is living with hydrocephalus and has endured 14 brain surgeries to manage his condition. Amanda Garzon, HA’s National Director of Program Services and Communications, who is also a parent to a teen living with hydrocephalus and a former Navy spouse, shared the story of James Spence, a retired Army veteran who developed hydrocephalus after a traumatic brain injury while serving in the military.
Dr. Mark Luciano, neurosurgeon and Director of the Cerebral Fluid Center at John Hopkins Medicine, discussed the challenges and opportunities faced by researchers to find treatment alternatives and cures. Diana Gray, HA’s President and CEO, urged Members of Congress to support increased research funding from federal agencies, such as the National Institutes of Health, the Department of Defense, and the Patient-Centered Outcomes Research Institute. She also stressed the importance of expanding access to affordable healthcare for patients.
“Of utmost importance is the ability of our patient population to have access to affordable healthcare that will provide the care and services that our patients need to stay in good health through their entire lifespan, including individuals with pre-existing conditions. This not only impacts the quality of life for individuals with hydrocephalus, including the parents of babies born with the condition, it also helps reduce healthcare costs for our entire system,” Diana said.
Caucus Briefing Photos: