Legislation allocating over $35 billion of medical research funding and a national registry is moving forward in Congress. Your representatives will be home from May 30th to June 4th, so take a moment to urge them — in person — to dedicate some of that to hydrocephalus.
If you want better treatments for hydrocephalus, now’s the time to speak out. Members of Congress are heading your way the week of May 30th – June 4th, during what’s known as a “district work period.” They’ll be meeting with their constituents at local community meetings — and your voice needs to be heard! Issues critical to our cause, including increased research funding as well as the establishment of a national registry, will be considered in the coming weeks. Now’s the perfect time to register your support. By attending a town hall meeting, you’ll have a chance to meet your representative and his or her staff person and urge him or her to publicly support those living with hydrocephalus. One great way for them to do so is to cosponsor HR 2313, a bill to establish a hydrocephalus registry (more information at https://www.hydroassoc.org/get-involved/advocacy/support-h-r-2313-national-hydrocephalus-registry/). For a full list of hydrocephalus-related policy issues, click here.
Telling your story in person sends a powerful message about your commitment to the cause — and it works! In the last few years, we’ve helped veterans by enhancing research funding, worked with coalitions to ensure hydrocephalus will be considered as part of a national neurological disease registry, and worked with dozens of lawmakers to spread the word through the Congressional Pediatric and Adult Hydrocephalus Caucus and Congressional Neurosciences Caucus. None of that would have happened if advocates had not spoken out.
Here are 3 simple steps to get you started:
- If you’re not sure who they are, find your House representative at house.gov and Senators at www.senate.gov.
- Visit their websites and social media pages to see if they’ve posted information about upcoming meetings.
- If there’s no calendar listed (it varies from office to office), call the office (either through the contact info on the website or through the capitol switchboard at (202) 224-3121). Ask the person who answers the phone if the legislator has any upcoming “town hall” meetings. Note that they may direct you to a district-based office.
Then put it on your calendar and plan to attend!