Press Releases

Washington, D.C. — Congresswoman Mary Gay Scanlon (PA-05) last week joined Yvette D. Clarke (NY-09), Brian Fitzpatrick (PA-01), and John Rutherford (FL-05) in introducing Ellie’s Law, bipartisan legislation that would provide critical research funding to address the public health crisis of brain aneurysms. 

Despite the widespread prevalence of this condition and the high societal cost it imposes on the nation, the federal government only spends approximately $2.08 per year on brain aneurysm research for each person afflicted with a brain aneurysm. The bill – named for Ellie Helton, a 14-year-old from Apex, North Carolina, who passed away in 2014 as a result of a ruptured aneurysm – authorizes $10,000,000 to the National Institute of Neurological Disorders and Stroke for each fiscal year 2024 through 2028, to remain available through September 30, 2031.

"Despite the tragically far-reaching physical, mental, emotional, and financial toll brain aneurysm ruptures have on our communities, they are one of the most underfunded disease research projects in the U.S.," said Rep. Scanlon. "I'm proud to join Reps. Clarke, Fitzpatrick, and Rutherford in introducing Ellie’s Law to address the deficiency in federal funding for brain aneurysm research, increase the quality of life of survivors and their families, and save lives."

“Within our nation, the tremendous and preventable losses of life inflicted by brain aneurysms continue to devastate families from all walks of life – particularly those of Color. Even survivors of these sudden tragedies often face a dramatically diminished quality of life,” said Rep. Clarke. “Addressing these tragedies by adequately funding brain aneurysm research is the right decision; it will save lives, it will change lives, I am honored to join my colleagues in leading this bipartisan legislation.”

“Undetected brain aneurysms claim the lives of over 6 million Americans each year,” said Rep. Fitzpatrick. “I’m proud to co-lead the bipartisan introduction of Ellie’s Law, which would significantly invest in life-saving research, prevention, and treatment for this condition that has historically lacked federal funding.”

“I’m proud to join my bipartisan colleagues in reintroducing Ellie’s Law this Congress,” said Rep. Rutherford. “The research funding in this legislation will support the development of best practices for detecting and treating unruptured brain aneurysms. We must continue raising awareness to better catch the signs of brain aneurysms.”

With an annual mortality rate of more than 500,000 deaths worldwide, brain aneurysms represent a significant public health crisis. Brain aneurysms are most prevalent in people ages 35-60 but can occur in children, and it is estimated half the victims of brain aneurysms are younger than 50. Approximately 30,000 Americans will experience a ruptured aneurysm each year, and fifty percent of ruptured aneurysms are fatal. Of those who survive, roughly sixty-six percent suffer permanent neurological deficits. Brain aneurysms are more likely to occur in women than in men (by a 3 to 2 ratio) and more likely to rupture in African-Americans (2.1 to 1 ratio) and Hispanics (1.67 to 1 ratio) than Caucasians. 

Find the full bill text here.

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