The Hydrocephalus Scoop on Capitol Hill for December 2023


Advocates Going Above and Beyond in 2023!
This highlight of 2023 focused on the strong efforts from hydrocephalus advocates around the country. Our advocates spread awareness for the condition to reinforce our advocacy efforts on Capitol Hill. We wanted to highlight a few advocates who were able to help up in key ways this year! 

Lauren Napoli
Lauren is the mother of a son with hydrocephalus and also the co-leader of the HA Community Network in Ventura, California. After Davis met with Congresswoman Julia Brownley’s (CA-26) office, Lauren personally reached out to share her hydrocephalus story with the staff member Davis had met with. This was personal for Lauren, as Representative Brownley is her district’s representative. The story shared by Lauren shed light on the large number of constituents that care about hydrocephalus in Representative Brownley’s district. This, in turn, was the catalyst for Representative Brownley joining our Hydrocephalus Caucus. Lauren’s efforts exhibit the power of constituent outreach in regard to hydrocephalus advocacy!

Emily Birtwistle
Emily is the mother of a young son with hydrocephalus and also the Chair of the annual Walk to End Hydrocephalus in Dallas, Texas. Aside from her busy schedule as a mom and walk planner, she has been able to work directly with HA on the advocacy front. She was a key factor in securing the new membership of Dallas Congressman Colin Allred (TX-32) in the Congressional Pediatric and Adult Hydrocephalus Caucus. To help emphasize the importance of him joining the caucus, she wrote a letter expanding on her family’s journey with hydrocephalus, his constituents that attend the DFW Walk and the importance of Texas representation on the Caucus. Davis was then able to share the powerful letter during his meeting with the office. Emily’s efforts show how impactful our stories can be in the effort to persuade lawmakers to join our cause!

Carly Weisman
Despite her demanding schedule in nursing school, Carly joined Amanda Garzon, Lakisha Harris, and Davis Kaderli at a meeting with the district office of Representative Chris Smith (NJ-4), co-chair for the Pediatric and Adult Hydrocephalus Caucus and Carly’s Representative in Congress. As a dedicated member of the hydrocephalus community, Carly eloquently addressed the challenges faced by the community, focusing on legislation in the 2024 Congressional session that will be important to us. She also shared upcoming events in the district. In doing this, she was able to educate Representative Smith’s District Director and help move our legislative priorities forward within his office. Carly’s drive and commitment are inspiring to us all!

2023 Hydrocephalus Caucus Highlights
Although there was a late start to direct advocacy efforts on the Hill regarding the Caucus, there are many things to be excited about! We were able to meet with almost 20 different lawmakers representing areas from around the country to educate them on important issues relating to the hydrocephalus community. From those meetings, we were able to secure 6 new House Representatives on the Congressional Pediatric and Adult Hydrocephalus Caucus. The new members are listed below.

Representative Ritchie Torres (NY-15)

Representative August Pfluger (TX-11)

Representative Chrissy Houlahan (PA-6)

Representative Brad Schneider (IL-10)

Representative Colin Allred (TX-32)

Representative Julia Brownley (CA-26)

We are still looking to confirm new members so stay tuned to see who joins the Caucus in 2024. The sky’s the limit!

New 2023 CDMRP Research Grants
The 2023 hydrocephalus research grants from the Congressionally Directed Medical Research Program (CDMRP) are here! In total, the Peer Reviewed Medical Research Program (PRMRP) within the CDMRP will fund 4 research grants totalling $11.2 million. 

You may be thinking “what is this research doing for our community?” This is a great question. One of the grants to FreeFlow Medical Devices LLC will fund the finalization of a coating that will prevent the growth of cells on shunt tubing in the brain and ultimately result in fewer shunt revision for individuals. Another grant to Senseer Health, Inc will focus on finalizing an internal monitor that works with any shunt to capture information about intracranial pressure and if there is proper flow through the shunt system. Information will be sent to the medical provider who can remotely monitor shunt performance. Ultimately, the company hopes to allow patients to receive the information, as well.

We are so excited about these important research grants and what they mean for our community. What great news to finish off the year!

Lawmakers out for the Holidays!
Last week marked the final time lawmakers would be in DC before the Holidays. The House and Senate will be adjourned until the 8th of January. Once back in town, they have a mere 10 days to avert a government shutdown. Haven’t we heard this story before? Unfortunately, we have. The continuing resolution (CR), which has kept the government open for the past few months, will expire on January 19 and February 2. The soon approaching expiration date and possible government shutdown will make this issue the utmost priority for lawmakers when they return to Capitol Hill. 

Lawmakers may choose to pass a short term CR. This short term measure will not result in any major cuts and will provide more time to pass the annual spending bills that fund government programs each year. However, the four party leaders in the House and Senate and the Whitehouse have still not agreed on topline spending numbers for the twelve 2024 spending bills. This standstill is very troubling. As more time passes, the likelihood of a full-year CR increases.

You may be wondering what a full-year CR is. Essentially, a full-year CR is a joint resolution that provides a continuing appropriation for a full fiscal year. In this case, it means funding for all of 2024. Although the passage of a full-year Continuing Resolution (CR) will keep government programs funded, there are many downsides to it. A year-long CR could hurt public health programs and research funding. This includes research funding from the National Institutes of Health (NIH) and Congressionally Directed Medical Research Program (CDMRP), which funds groundbreaking hydrocephalus research each year. In total, it could result in a more than $70 billion cut to non-defense spending. 

To sum up things in a simple way, the best outcome is for Congress to pass the 12 annual spending bills so that there are no cuts in regard to hydrocephalus research. 



January 3 Hydrocephalus Advocacy Update  

We hope you can join us for our first meetup of the year on January 3rd at 7pm EST. We will review our plans for 2024 and how you can get involved. If you have not registered for our Meetups yet, please sign up here. You only need to register once to be on the list.

Take Action

Be sure to visit our Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly!

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