aDVOCACY

In 2025, TBF intensified its advocacy efforts, transforming individual stories into collective momentum for systemic change. We stood before lawmakers, shared firsthand experiences, and pushed for stronger federal action to fund preventative research. Our collective voice is a powerful instrument for change. We made meaningful progress advocating for Ellie’s Law, reinforcing our belief that one day we will live in a world where brain aneurysms are found prior to rupture.

advocacy Priorities

  1. Ellies Law
    • Ellie’s Law is a bipartisan bill focused on increasing funding for brain aneurysm research, treatment, and prevention, through the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. If passed, this legislation would authorize $100 million over five years for brain aneurysm research.
  2. Brain Aneurysm Funding Appropriations Language. See recent language inclusions below.

advocacy Achievements

Conducted 200+ meetings with congressional offices – including 170 during Brain Aneurysm Advocacy Day.

Attended the NINDS Non-Profit Forum 

Released an updated TBF Advocacy Toolkit – a resource for partners seeking to engage policy-makers and raise awareness about brain aneurysm risks.

Successfully influenced the draft appropriations language for FY 2026. The report from the House Appropriations Committee including called for increased funding for prevention and early detection of brain aneurysms:

  1. “Brain Aneurysms. (pg. 101) —The Committee remains concerned that an estimated 1 out of every 50 individuals in the United States has a brain aneurysm, and an estimated 30,000 Americans suffer a brain aneurysm rupture each year, often with little or no warning. Ruptured brain aneurysms are fatal in about 50 percent of cases. Despite the widespread prevalence of this condition and the high societal cost it imposes on the United States, the Federal Government spends only about $2.94 per year on brain aneurysm research for each person afflicted with a brain aneurysm. The Committee encourages NINDS to increase its support for research focused on prevention and early detection of brain aneurysms.”
  2. “Brain Aneurysms. (pg. 200) —The Committee recognizes that although one in 50 Americans have a brain aneurysm, there are typically no warning signs or symptoms unless they rupture. Currently, up to 50 percent of patients will not survive such a hemorrhage. Even when an aneurysm has ruptured, the symptoms are not widely known among healthcare professionals, such as first responders and emergency room physicians. The Committee continues to support efforts by HHS to facilitate the development of best practices on brain aneurysm detection and rupture for first responders, emergency room physicians, primary care physicians, nurses, and advanced practice providers. In doing so, the Committee encourages the Secretary to consider incorporating topics including, but not limited to, the symptoms of brain aneurysms, evidence-based risk factors for brain aneurysms, appropriate utilization of medical testing and diagnostic equipment, and screening recommendations. The Secretary is urged to develop and implement a strategy for disseminating information about such best practices in consultation with appropriate stakeholders.”

Successfully influenced the Senate Appropriations Committee  with the inclusion of our brain aneurysm language in the Fiscal Year (FY) 2026 Labor, Health, and Human Services, and Education, and Related Agencies (LHHS) Appropriations Act on a 26-3 vote. The Committee emphasizes concerns that research funding levels do not adequately address brain aneurysm prevalence in the United States. The specific language is below:

  1. Brain Aneurysms. (pg. 119) —The Committee remains concerned that an estimated 1 out of every 50 individuals in the United States has a brain aneurysm and an estimated 30,000 Americans suffer a brain aneurysm rupture each year, with little or no warning. Ruptured brain aneurysms are fatal in about 50 percent of cases. Despite the widespread prevalence of this condition and the high societal cost it imposes on our Nation, the Federal Government only spends approximately $2.08 per year on brain aneurysm research for each person afflicted with a brain aneurysm. The Committee encourages NINDS to increase its support for research focused on prevention and early detection of brain aneurysms.
“Ellie’s Law” Co-Sponsors:

House of Representatives:

  • Representative Yvette D. Clarke
  • Representative John H. Rutherford
  • Representative Mary Gay Scanlon
  • Representative Chrissy Houlahan
  • Representative Stephen F. Lynch
  • Representative Rashida Tlaib
  • Representative Don Bacon
  • Representative Jerrold Nadler
  • Representative George Latimer
  • Representative Suzan K. DelBene
  • Representative Josh Gottheimer
  • Representative Gus M. Bilirakis
  • Representative Sean Casten
  • Representative Joe Wilson
  • Delegate Eleanor Holmes Norton
  • Representative Lori Trahan
  • Representative Michael Lawler
  • Representative Angie Craig
  • Representative Eric Swalwell
  • Representative Eugene Simon Vindman
  • Representative Robert P. Bresnahan
  • Representative Seth Magaziner
  • Representative Donald G. Davis
  • Representative Jahana Hayes
  • Representative Terri A. Sewell
  • Representative Seth Moulton
  • Representative Bennie G Thompson
  • Representative Christopher R. Deluzio
  • Representative Ayanna Pressley
  • Representative Jerfferson Van Drew
  • Representative Ro Khanna
  • Representative William R. Keating
  • Representative Jamie Raskin
  • Representative Kathy Castor
  • Representative Scott H. Peters
  • Representative Richard Hudson

Senate:

  • Senator Markwayne Mullin
  • Senator Jack Reed 
  • Senator Edward J. Markey
  • Senator Amy Klobuchar

The broad bipartisan support across states underscores the growing national recognition of the urgency for preventative aneurysm research and enhanced public-health measures. 

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