Advocacy

Advocacy in Action

Carly Weisman Meets with the District Office of Representative Chris Smith

Carly Weisman has emerged as one of the most passionate advocates for HA’s Hydrocephalus Action Network (HAN). 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.

New Hire Spotlight: Davis Kaderli

Welcome to Meet Our New Advocacy Engagement Manager

Davis is a recent graduate from George Mason University (GMU), where he received his bachelor’s degree in government and international politics. He will complete his Masters in Public Policy from GMU in June. As the Advocacy Engagement Manager, Davis is responsible for growing a grassroots advocacy network and strengthening HA’s relationship with federal, state, and local lawmakers. Davis has legislative experience working in both the U.S. Senate and the House of Representatives. He also interned with the Tourette Association of America. Davis’ own experience living with a neurological condition has inspired him to work in a space that creates stronger congressional representation for those with health challenges and disabilities.

HA Pursues an Aggressive Advocacy Agenda in 2024

Advocacy was formally established as a strategic pillar for HA by the Board of Directors in 2011. Our primary advocacy goal is to ensure that the federal government is investing adequate funds into hydrocephalus research and into the appropriate programs that will support those affected by hydrocephalus. These goals require targeted awareness campaigns to ensure that decision makers understand that hydrocephalus is a condition that affects a broad array of people, is not cured with the insertion of a shunt, and is a growing problem with a significant burden on our people and the economy. We work directly with members of Congress and through coalitions that pursue legislative strategies in-line with our priorities. In 2024, we are looking forward to a busy legislative agenda, led by a new HA staff member, Davis Kaderli, who has energized our advocacy work on Capitol Hill. Below we outline our planned activities. We invite everyone in our community to join our advocacy efforts next year.

CDMRP Focused Caucus Briefing : February 2024

To begin the year, the Congressional Pediatric and Adult Hydrocephalus Caucus will host our first caucus briefing since 2019! The event, which will take place in mid-February in the United States Capitol, serves as an effort to educate congressional staffers and members of Congress about the issues directly affecting the hydrocephalus community.

The first caucus briefing will center around the recent momentum we have had on the research front. In FY2022, hydrocephalus research received $15.3 million from the Congressionally Directed Medical Research Program (CDMRP). The briefing will explain the importance of increased hydrocephalus research funding within the program. The briefing will also feature CDMRP funded hydrocephalus researchers who received grants during the FY2022 cycle. More information about the briefing’s date and time will be provided soon.

Rare Disease Advocacy Week: February 25-28, 2024

The Everylife Foundation for Rare Diseases will host their Annual Rare Disease Advocacy Week in Washington, D.C. from February 25-February 28. Although hydrocephalus as a whole is not considered a rare disease due to the over 1 million individuals who have the condition, the various medical classifications (etiologies) of hydrocephalus are considered rare. For example, hydrocephalus caused by a brain bleed (post hemorrhagic hydrocephalus) or X-Linked Hydrocephalus.

The event will allow advocates across the rare disease community to share their stories with U.S. House and Senate Offices. It will also allow them to educate staffers and members of Congress about legislation that is important to the rare disease community. We are looking forward to participating in this event with our other allies in this space. Registration for the event will open at the beginning of January. In the meantime, you can view the 2024 agenda on the EveryLife website.

Joint Caucus Briefing with the Spina Bifida Association: Date to be Announced

We are also looking forward to partnering with the Spina Bifida Association to plan a joint caucus briefing between the Congressional Pediatric and Adult Hydrocephalus Caucus and the Congressional Spina Bifida Caucus. The briefing will focus on the work of our new coalition, the National Partnership for Pediatric to Adult Care Transition (NPPACT), and the challenges regularly faced by individuals with a chronic condition while transitioning from pediatric to adult care within the healthcare system. More information about the briefing will be provided soon.

Rally for Medical Research: September 2024

We are excited to once again bring advocates to Capitol Hill to participate in the Rally for Medical Research. The event brings together individuals within the medical advocacy community to meet with U.S. Senate and House Offices to advocate in favor of increasing the budget for the National Institutes of Health (NIH). The NIH funds a variety of groundbreaking research that brings us closer to eventually finding a cure for hydrocephalus. New increases in the NIH budget will expand funding opportunities for hydrocephalus research and provide more resources to our research community. September is a perfect time to plan a trip to D.C.! More information about the event will be provided soon.

NPPACT Launches in 2023 to Improve Pediatric to Adult Care Transition

In 2023, the National Partnership for Pediatric to Adult Care Transition (NPPACT) was launched, marking a significant milestone in the healthcare landscape for young people with congenital or pediatric chronic health conditions. This initiative is dedicated to addressing the critical gap in the transition process from pediatric to adult healthcare, ensuring that these individuals receive the continuous, specialized care they need as they grow older. The Spina Bifida Association (SBA) and the Hydrocephalus Association (HA) have spearheaded NPPACT, convening a coalition to tackle the unmet needs of patient communities. Advances in healthcare have enabled many children with serious, life-threatening, and disabling conditions to live longer and fuller lives. However, the healthcare system has not kept pace with these advancements, resulting in many young adults falling through the cracks as they transition from pediatric to adult care.

NPPACT's Mission and Goals

NPPACT is a multi-disciplinary group of stakeholders dedicated to advocating for federal programs, investments, and policies that support smoother transitions for adults living with serious, life-threatening, and disabling conditions that were initially diagnosed and managed in childhood. Key areas of interest include:

Training for Adult Care Providers: Ensuring that adult healthcare providers are well-equipped to manage conditions typically treated in pediatric settings.
Insurance Coverage: Advocating for insurance policies that cover the necessary specialized care for adults with chronic conditions.
Telehealth Flexibilities: Supporting expanded telehealth options to provide continuous care regardless of geographical barriers.
Research Funding: Increasing funding for research into best practices for pediatric to adult care transitions.

LEARN MORE ABOUT NPPACT