Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

New Members of the Congressional Hydrocephalus Caucus

What’s that caucus-thing again?

The Congressional Hydrocephalus Caucus is a group of members of Congress interested in learning more about (and taking action on) hydrocephalus-related policy issues. It’s HA’s way of keeping Capitol Hill up-to-speed. Representative Ron Kind (D-WI) and Representative Abigail Spanberger (D-VA) are our newest members. Shout out to Dorothy Sorlie (Rep. Kind) and Stephanie Schuchert (Rep. Spanberger) for making it happen. If you want a shout out in the next newsletter, call your legislators and ask them to join the caucus. With a little persistence on your part, you can almost always get them on board.

Funding for Hydrocephalus Research through CDMRP, NIH, and DoD

Too. Many. Acronyms. Give me the basics.

The Congressionally Directed Medical Research Program (CDMRP) conducts research within the military community. The grants come from the Department of Defense (DoD). It’s Congress’s role to come up with overall funding levels every year, and they’ve made good progress in the last couple weeks. The “authorization” bill (which allows the program to exist) has passed both the House and the Senate. They’ll be resolving differences in September and we expect CDMRP to continue in its current form. The CDMRP “appropriation” (the actual dollars going into the program) has passed the House and will move through the Senate in September.

That’s two acronyms down. How about the third?

NIH stands for National Institutes of Health. It awards most of the federal government’s grants for medical research. This year, the NIH is likely to get a big boost in funds, mainly focused on research related to COVID. The bill containing NIH funding also funds the BRAIN Initiative and NINDS.

Now you’re just making up acronyms!

Nope. BRAIN stands for Brain Research through Advancing Innovative Neurotechnologies, and its goal is to improve our understanding of the human brain. The current bill proposes $500 million for this program. The NINDS (National Institute of Neurological Disorders and Strokes) studies a range of disorders, including hydrocephalus. It would receive $2.4 billion.

US Pain Foundation Report

Is HA taking a position on this? I’m really hoping we’re addressing chronic pain in our community.

We are. Last year, the US Pain Foundation worked with the Department of Health and Human Services to research and report on best practices in pain management. You can read the report here:

If this was last year, why are we talking about it now?

Good question. The Foundation has been lobbying Congress to have the report more broadly distributed and acted upon, and is making good progress. The House included the Foundation’s language in its funding bill. Now it needs to go through the Senate. We’ll be monitoring to see if further action is needed.

Which brings us to…

COVID-19 Relief

Apparently, COVID’s here to stay for quite a while, and Congress is working on ways to help healthcare providers, state & local governments and plain old people cope. You’ve probably heard the House and Senate are at an impasse on how much funding should be provided and to whom. The HA team believes that some of that money should go to research on COVID’s impact on the brain. That’s why we signed onto a letter from the American Brain Coalition asking legislators to agree to a bipartisan request for additional emergency funding for NIH.

Phew. Yes, even though it’s an election year, there’s still a lot going on, which means you still have time to make a difference! 

Hydrocephalus Awareness Month (HAM) is right around the corner!

We are working with Congressman Chris Smith (R-NJ) to read a resolution on the House floor declaring September Hydrocephalus Awareness Month. This is a great time to call your legislators and ask them to join the Congressional Pediatric and Adult Hydrocephalus Caucus, a one-stop shop for legislators to learn about hydrocephalus-related policy. All you need to do is find your representative at Then either call their office or find them on social media and send a message that you’d like the representative to join the Congressional Hydrocephalus Caucus. It’s that easy! Email us at and let us know who you reached out to so we can follow up. Visit our website to make sure your member hasn’t already joined. If they have, call and thank them for standing with our community!

We are STRONGER together…

This time continues to put incredible stress on all of us a our nation grapples with so much uncertainty and upheaval. HA is working hard to keep our community connected and supporting each other. 

#HYDROSTRONG is trending across social media as our community unites to raise awareness and to also raise much needed funds to make sure HA can continue to provide research grants and support programs. This is all happening as part of our WALK to End Hydrocephalus program. It’s not just about walking this year! Read more about how you can participate – in any way you’d like!

Our national conference brought over 2,100 of us together for an incredible educational event. Our conference recordings are available for purchase, bundled in affordable packages. Check out our recordings here.

To keep us connected, our Community Networks across the country are holding virtual meet-ups. Join us! You can find your state’s local community on Facebook here

Please stay safe and healthy!

We’re here to keep you updated on the issues facing our community. Until next month…thanks for reading!

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