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 $14.4M in funding from the CDMRP to further their science and bring us closer to prevention and alternative treatment options.
HA Holds Virtual Hydrocephalus Day on Capitol Hill
Despite the fact that we couldn’t get on trains, planes, and automobiles to come together in Washington, DC, 180 advocates representing 30 states from across the country participated in a “Virtual Fly-In” on July 20, 2021. Hydrocephalus patients, along with caregivers, doctors, and others, participated in 78 online meetings with staff and legislators in the U.S. House and Senate. 10 Members of Congress personally joined the meetings. Advocates shared their personal experiences, leaving many policymakers stunned at the hardship of a condition they knew little about. As part of the event, advocates urged legislators to join the Congressional Pediatric and Adult Hydrocephalus Caucus, co-sponsor a Hydrocephalus Awareness Month resolution, and support hydrocephalus-related research funding.
New Members Join Congressional Hydrocephalus Caucus
Representative
Cindy Axne (D-IA)
Representative Derek Kilmer (D-WA)
Representative
Mike Levin (D-CA)
Representative Thomas Souzzi (D-NY)
Representative
Joe Wilson (R-SC)
In 2021, we were pleased to welcome several new members to the Congressional Pediatric and Adult Hydrocephalus Caucus, including Representative Cindy Axne (D-IA), Representative Derek Kilmer (D-WA), Representative Mike Levin (D-CA), Representative Thomas Souzzi (D-NY), and Representative Joe Wilson (R-SC).
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: www.hydroassoc.org/congressional-pediatric-and-adult-hydrocephalus-caucus/.