HA Visit To Capitol Hill Yields Insights into Hydrocephalus Research Funding
By Paul Gross, HA Chairman Board of Directors
HA had a very productive day on Capitol Hill last Friday. Our day began with a meeting with the staff of the Armed Services committee to explore the funding opportunities for hydrocephalus in the Congressionally Directed Medical Research Program (CDMRP) and the Defense Appropriations for Traumatic Brain Injury. I was joined by Sergeant James Spence of the 191st Infantry Brigade out of Fort Lewis, Washington who has hydrocephalus after two tours of duty in Iraq; Dr. Michael Williams, Director, Sandra and Malcolm Berman Brain & Spine Institute; and our incoming CEO, Dawn Mancuso. We were given good leads on how to pursue our funding objectives. Next, we participated in the Day of Testimony. We had a great set of speakers, from patients and advocates to medical professionals including neurologists, neurosurgeons and a neuropsychologist. All in all, the program was a good initial effort to raise awareness on Capitol Hill. In the afternoon, we had meetings with Representative Rosa DeLauro’s staff, the Energy and Commerce committee staff and the minority speaker’s staff. Each visit gave us insights into how to move forward with our agenda in these challenging economic times. We got a tough reality check, learning that specific disease research funding was highly unlikely in the current ‘deficit reduction’ climate. But everyone gave us hope and new angles to pursue. We were reminded that we need to be in this for the long haul and we are! With the appointment of our new CEO, who will be based in Washington, we are prepared to engage on multiple political and legislative fronts to bring attention and funding to the cause of hydrocephalus.