Advocacy
Hydrocephalus Once Again Receives Research Funding by the Department of Defense
In 2014, President Obama signed a law that made hydrocephalus an eligible condition to receive research funding under the Department of Defense Congressionally Directed Medical Research Program (CMDRP). Every year advocates need to petition a member of the U.S. Senate to put our name forward to continue to receive funding under the CDMRP. Senator Patty Murray stood with our community again this year and hydrocephalus was once again included as an eligible condition under the Fiscal Year 2022 Defense Appropriations Act. To date, scientists have received $14,389,034 in funding from the CDMRP to further their science and bring us closer to prevention and alternative treatment options.
Congressional Hydrocephalus Caucus Supports Hydrocephalus Awareness Month
In 2022, Congressman Chris Smith and Congressman Lloyd Doggett, co-chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus, made statements in support of Hydrocephalus Awareness Month with the support of the other members of the Caucus. The Congressional Pediatric and Adult Hydrocephalus Caucus informs Congress about the needs of those living with hydrocephalus, their families and caregivers, and is an important way for members of Congress to show their support of our issues and to elevate the discussion about our key legislative priorities. The Caucus has been instrumental in helping the hydrocephalus community advocate for legislation that benefits families and opens doors to new research opportunities that could result in new treatment options, forms of prevention, and a cure.
Visit our website for the latest list of congressional offices that are on the Caucus: hydroassoc.org/congressional-pediatric-and-adult-hydrocephalus-caucus/.
HA Spearheads New Coalition for Transition
The Hydrocephalus Association signed on as a founding member and co-leader of The National Partnership for Pediatric to Adult Care Transition (NPPACT). NNPACT is chaired by Diana Gray, HA, and Sara Struwe, Spina Bifida Association. It is a multi-disciplinary group of stakeholders committed to advocating for federal programs, investments, and policies, which will help ensure smoother care transitions, including developing and maintaining adult care settings designed to support adults living with serious, life-threatening, and disabling conditions that were initially diagnosed, treated, and managed in childhood. In December, Sara Struwe and Diana Gray met with the CMS Medicare Medicaid Coordination Office to discuss the healthcare transition cliff that many dually eligible individuals with chronic and debilitating conditions experience. They discussed the need for data on the cost of care of our communities to show what happens when these individuals hit the transition cliff. This data will inform our advocacy efforts to create a better standard of care and better health outcomes.