ADVOCACY

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Our Advocacy Efforts Worked!

Members of Congress have hundreds, if not thousands, of priorities to consider but when it came time to pass a major funding bill, HA made sure they heard the priorities of the hydrocephalus community. With the help of patient volunteers, caregivers and medical professionals, a major budget bill was signed into law by President Trump in September 2018 that protects and increases funding for several crucial hydrocephalus-related research programs.

This bill included $761 million for the Department of Defense's Congressionally Directed Medical Research Programs (CDMRP), which funds important hydrocephalus research. It also included nearly $39.1 billion for the National Institutes of Health (NIH), a 5.4 percent increase from the last fiscal year.

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Making Our Voices Heard at the Rally for Medical Research

A small but mighty team of hydrocephalus advocates from Washington, D.C., Maryland and Virginia joined the Hydrocephalus Association on Capitol Hill in September for the Rally for Medical Research. The Rally for Medical Research is the one day where we unite with 300 other health advocacy groups to support sustained funding for the National Institutes of Health (NIH). Advocates held meetings with members of Congress, where they shared their personal stories and requested more funding for NIH.

Congress Preserves Program Essential to Quality Hydrocephalus Research

When the National Defense Authorization Act was up for consideration in Congress, the Hydrocephalus Association joined a coalition of other groups to preserve the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP)—and we succeeded! Working with the Defense Health Research Consortium, we once again avoided Congressional imposition of draconian administrative burdens on funding research projects. Grants awarded through the CDMRP have led to breakthroughs on a range of disorders and conditions impacting the health and lives of the U.S. military. Initially, this program did not include hydrocephalus as one of the conditions to be studied. Thanks to our advocates, that changed in 2014 when CDMRP added hydrocephalus to the list of eligible conditions.

Amanda Garzon, Director of Communications and Marketing
Hydrocephalus Association

“The inclusion of hydrocephalus on the list of eligible conditions was a direct result of a small dedicated group of Hydrocephalus Association advocates working in conjunction with our allies on Capitol Hill.”

CHANGE MAKER

Ken Schoppmann

Ken Schoppmann

Ken Schoppmann is a tireless advocate for the hydrocephalus community. He has attended every meeting and briefing we have had with Congress, sharing his story and raising awareness about our condition and the need for Federal support. In addition, he has spoken on our panels at our Education Days at Children’s Hospital and joined us at the United Nations Convention on the Rights of Persons with Disabilities. We are fortunate to be able to count on Ken anytime we need to educate members of Congress about the needs of the hydrocephalus community and the importance of funding research.

Ken Schoppmann

Hydrocephalus Advocate

"Members of Congress and their staff hear countless messages every day. By visiting with them in person, we help them see the human side of Hydrocephalus, and tell the stories of our challenges and hope for the future, I'm inspired by meeting other members of the HA community, including those who travel to Washington for the rallies. Their stories of determination, and the strength they have to overcome their challenges, motivate me to do whatever I can to help."