The Hydrocephalus Scoop on Capital Hill for May 2023

As Congress Debates, We Advocate

Right now, Congress has two important tasks as it works to increase the country’s debt limit and also come to agreement on how much money will be spent in next year’s federal budget. As congressional leaders meet with the White House to finalize a deal on the debt limit, congressional committees are hard at work holding hearings and negotiations on spending levels for next year.

The Hydrocephalus Association has been advocating with key congressional offices to ensure that Hydrocephalus is a condition that is eligible for the Congressionally Directed Medical Research Program (CDMRP). Hydrocephalus advocates have also worked hard to have $5 million set aside specifically for Hydrocephalus research.

Here is where you come in! We need your help in getting these funding requests across the finish line. Please add your voice and visit our Advocacy Action Center. Your members of Congress need to hear from advocates like you as they make important funding decisions! Take two minutes to add your voice and then share with your networks!

Action Center
Congress Will Be Home This Summer!

Keep a lookout in your local community for your U.S. Representative and Senators starting this week! During the summer months, members of Congress often leave Washington D.C. to go back home and hear from advocates in the community. This is a great time for you to introduce yourself and talk about how important hydrocephalus research and programs are to the local community. Be sure to share your personal story and highlight the need for congressional action. You can also ask your member of Congress to join the Congressional Hydrocephalus Caucus and show their support for our legislative agenda. If you don’t meet with them in person, remember you can visit our action center and send a message asking them to join the Caucus today!

For more information and ideas on how to put together an effective meeting, join our next Advocacy Update on July 12th. Register here. You can also email us at


We are members of some wonderful advocacy coalitions that allow us to amplify our voice in a larger patient community. Here are some other opportunities for you to engage:

June 22 RDLA Virtual Youth and Teen Hill Advocacy Day 

LAST MINUTE ANNOUNCEMENT! Today is the last day to Register! Rare Disease Legislative Advocates (RDLA) invites members of the rare disease community between 10 and 18 years old to participate in their first Virtual Youth & Teen Hill Advocacy Day. Advocates will have the opportunity to meet virtually with their Members of Congress and share their rare disease story. Prior to meetings with Members of Congress, advocates are required to attend virtual trainings on how Congress creates laws, how to communicate with policymakers, and how to understand key policies affecting the rare disease community, designed for youth and teens. Virtual meetings with Members of Congress will take place on Thursday, June 22, 2023 between 9 am and 5 pm ET. Click here to learn more and register.

July 12 Hydrocephalus Advocacy Update 

Don’t forget to join us for our next Advocacy Update to learn about what the Hydrocephalus Association is working on and to answer your questions about policy, happenings on Capitol Hill, and ways to engage with your elected officials. Click here to register.

August 7-18 Rare Across America 

Join Rare Disease Legislative Advocates (RDLA) for Rare Across America! While all forms of Hydrocephalus across the age spectrum are not considered a “rare disease,” we are still members of the rare disease community as many etiologies themselves can fall into the rare category. Rare Across America allows you to join advocates from other disease and condition communities to make an impact on federal policy close to your home. RDLA organizes meetings with your Members of Congress and/or the Member’s staff during the congressional August recess. Virtual and In-Person meetings will take place between August 7th and 18th. All House meetings will be held in-person at the Representative’s district office and all Senate meetings will be virtual. The RDLA team also helps you prepare for meetings, provides legislative resource materials, and hosts pre-meeting training webinars. No prior experience is necessary. Registration closes July 11th. Click here to learn more and register.

Okay, Advocates,

Congrats to all of our young advocates graduating over the next month!

Our mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.

Join Our Advocacy Efforts

Subscribe to our Newsletter

Was this article helpful?

Thanks for your feedback!
Posted in