Group Pushes for Passage of “Ellie’s Law” to Increase NIH Funding for Brain Aneurysm Research; Aims to Build Awareness of the Broad Impact of the Disease on Patients and Caregivers 

HANOVER, Mass., March 19, 2024 /PRNewswire/ — The Brain Aneurysm Foundation (BAF), the leading advocacy organization supporting education, research, and policy to transform the treatment of brain aneurysms, today joined with caregivers, survivors, researchers, and physicians from across the U.S. to advocate for greater funding and to increase awareness of brain aneurysms and the long-term impact they can have on individuals and their families.

The group will meet with lawmakers to discuss the prevalence of the disease, the significant economic impact – including medical expenses, lost productivity, and long-term disability – as well as the critical need for new interventions that can help better detect and treat aneurysms. It is estimated that one in fifty people in the US has a brain aneurysm, with more than 30,000 people suffering from ruptures annually, of which half are fatal. Worldwide, there are close to 500,000 deaths each year from brain aneurysms, half of which occur in people under the age of 50.

“The tragic loss of our daughter last year showed us the suddenness of brain aneurysms, how they strike without warning and can take the lives of those who are young, vibrant, and otherwise healthy,” said Lynne Caruso, whose 31-year-old daughter Katelyn died from a ruptured aneurysm that occurred following a morning workout. The family’s extensive work to honor Katelyn, who died just months before her planned wedding, has led to their involvement in supporting increased funding for critical research. “This is an underappreciated and potentially devastating condition, and our focus is to ensure that dollars reach those working to develop new interventions that can save lives and prevent the unimaginable suffering our family and others have had to experience.”  

Brain Aneurysm research receives a disproportionately low level of funding from the National Institutes of Health compared to other neurological disorders, with only two dollars provided annually for each person affected. The BAF is working on the passage of Ellie’s Law (H.R. 902 and S. 895), which would provide dedicated research for aneurysm prevention and improve the long-term outcomes for aneurysm survivors. Ellie’s Law would authorize $10 million each fiscal year for five years from the National Institute of Neurological Disorders and Stroke (NINDS) to conduct or support further comprehensive research on unruptured intracranial aneurysms.

“Research shows that up to five percent of the US population may have an unruptured aneurysm, yet despite the prevalence, awareness of the condition and its risk factors remains low. Our focus is to provide education regarding the potential severity of the disease and to press for critical research funding for promising life-saving research and innovation,” said Christine Buckley, executive director of the BAF. “It is an honor to be joined by so many of the families, survivors, caregivers, and physicians who are taking the time to share their stories regarding the impact of the disease and the economic impact on individuals, our health system, and society.” 

Brain aneurysms often do not cause symptoms until they rupture, at which point they become a medical emergency. Research focused on identifying biomarkers or advanced imaging techniques may help in the detection of aneurysms prior to rupture, significantly improving patient outcomes by allowing for early interventions. There is also a significant need for new surgical techniques, endovascular procedures, and minimally invasive interventions that can lead to safer and more effective treatments for both ruptured and unruptured aneurysms.

“Researchers today often rely on vital seed funding from organizations like the BAF to advance research for subarachnoid hemorrhage and other brain diseases. The BAF’s support for new innovation has been essential, but there is clearly a need for additional funding sources to support research as we get closer to potential breakthroughs in the field,” said Vince Tutino, an assistant professor at the Jacobs School of Medicine and Biomedical Sciences at the University of Buffalo and CEO of Neurovascular Diagnostics, Inc., which is working to develop a blood test for detecting whether brain aneurysms may rupture. “Brain scans can be cost prohibitive and are often not recommended by a physician unless there is a family history of the disease. Developing simple blood tests and other forms of detection will lead to millions of lives being saved and billions of dollars from being spent on patient care.”