Hydrocephalus-related policy issues have been on the move in Congress. We thought we’d give you a quick rundown on what’s going on and how it impacts our community.
Philip Brooks, a teen HA community member, recounts his experience during Rare Disease Week, when hundreds of people gathered to advocate for hydrocephalus and other conditions.
by Paul Gross, HA Chairman of the Board of Directors Yesterday, hydrocephalus was a hot topic in Congress during the debate over the annual defense spending bill. Experts believe that two-thirds of our current and former military service members suffering from moderate to severe traumatic brain injuries are at risk of developing hydrocephalus – more […]
On Thursday, the 28th of July, the second day of our conference, we held our second Advocacy Day on Capitol Hill, “Climbing Capitol Hill for a Cure.” Hundreds of members of the hydrocephalus community braved the intense heat of a Washington, DC summer day to bring our message of increased funding for hydrocephalus research to […]
By Rick Smith, HA Acting CEO As a delegation from the Hydrocephalus Association heads to Washington D.C. to participate in the September 23rd Day of Testimony, we thought we would provide you with a complete update of our advocacy efforts. First, we have just completed an in-depth analysis of investments in hydrocephalus research by the […]
By Rick Smith, HA Acting CEO As we enter September, which has been designated as National Hydrocephalus Awareness Month, HA is working with the Pediatric Hydrocephalus Foundation and other organizations on the planning and organizing of A Day of Testimony on Capitol Hill. The Day of Testimony will take place on September 23rd, and our […]
by Karima Roumila, MPH The Hydrocephalus Association would like to make hydrocephalus more known in Congress. Let’s educate our policy makers about hydrocephalus and let them know that constituents in their districts are affected by the condition and more research funding is needed. Contact Your Legislator for Hydrocephalus As a constituent, your lawmakers and political […]