HANOVER, Mass., Sept. 12, 2024 /PRNewswire/ — The Brain Aneurysm Foundation (BAF), the leading advocacy organization supporting education, research, and policy to transform the treatment of brain aneurysms, marked its 30^th anniversary today by convening at its annual meeting leaders from medicine, government, and academia to highlight emerging research and advocacy initiatives to support the needs of patients, caregivers, and survivors.

Moving into its fourth decade, the BAF remains focused on increasing Federal funding for brain aneurysm research, raising awareness to better address the long-term financial impact on families that provide long-term care to survivors, while ensuring access to and reimbursement for potential life-saving imaging for individuals at high risk of rupture. At its symposium, being held today in Boston, the BAF is also recognizing 15 academic researchers with funds to support a range of programs to predict, detect, and treat brain aneurysms. These include efforts that use artificial intelligence to predict the likelihood of aneurysm formation, next-generation imaging to better detect and identify aneurysms, and research on the potential use of embedded sensors and blood tests to predict ruptures.

Featured speakers at today’s events include Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke and Tom Nolan, CEO of leading fashion brand Kendra Scott. 

“It is tremendously gratifying to be part of a grassroots community that is so highly engaged and aligned around the pressing needs of those impacted by brain aneurysms and to fund innovative programs that advance early detection, prevention, and treatment,” said Christine Buckley, Executive Director of the BAF. “Having grantees come together with those that fund their work creates a direct connection and shows the immediate impact of their donations. Our goal, however, remains to increase the pace of progress while ensuring at-risk individuals are provided access to scans so doctors can intervene before a rupture.”

It is estimated that one in fifty people in the US have a brain aneurysm, with more than 30,000 people suffering from ruptures annually, of which half are fatal. Moreover, studies show that between one and four percent of all people who go to the emergency room for a severe headache have a ruptured aneurysm – though approximately 25 percent of those individuals will be misdiagnosed or have a delayed diagnosis. Currently, Medicare only covers the cost of imaging once two members of a family have been impacted by a brain aneurysm, providing a critical gap in coverage for those who may be genetically pre-disposed to rupture.

“The shocking loss of my sister to a brain aneurysm over a decade ago continues to impact my family profoundly. Seeing how suddenly ruptures can claim the lives of young, otherwise healthy individuals, often with so little warning, makes it critical for everyone to be aware of the signs and symptoms to avoid these tragic outcomes,” said Tom Nolan, CEO of Kendra Scott. “I am deeply appreciative of the BAF’s commitment to education, and I’m inspired by the work of everyone in the brain aneurysm community and their focus on preventing this disease.”

The BAF was founded in 1994 by Dr. Christopher Ogilvy and Deidre Buckley, N.P., who started the foundation as an extension of their practice at Mass General Hospital and later Beth Israel Hospital in Boston. Through their work with patients, it was clear that surgical interventions were only the start of a patient’s journey. Over the past three decades, the organization has become the leading advocate for patients, providing essential resources, working with physicians globally on educational initiatives and with first responders so they may better recognize the signs of a brain aneurysm. During that period, the BAF has also been responsible for:

• Raising and distributing millions of dollars in research funding to academic researchers in the US and Canada
• Establishing a nationwide network of advocates to lead educational programming and regional support groups
• Leading medical education program for physicians regarding early detection, diagnosis, screening, and treatment options
• Advocating for greater insurance coverage for vital brain scans to detect aneurysms
• Recognition of “Brain Aneurysm Awareness Month” (September)
• Driving Congressional support for “Ellie’s Law” to increase NIH funding for brain aneurysm research, which now includes hundreds of signatories from the US House and Senate

“The Brain Aneurysm Foundation’s advocacy in the treatment of brain aneurysms is vitally important for promoting the health and safety of our residents in Boston and beyond,” said Boston Mayor Michelle Wu. “As a family member of a loved one who suffered an aneurysm, I am honored to join the foundation in celebrating this tremendous milestone and the continuation of their efforts through these research grants. Through this partnership, we will continue to fight to raise awareness, fund research, improve outcomes, and save lives.”

“When we first learned that my son was in the hospital with a brain aneurysm, we didn’t know anything about the disease or what it meant for his future,” said Joe O’Leary of Medford, Mass., whose son Michael suffered a rupture when he was nineteen years old. “The BAF was the first place we searched for information, and they provided the background needed to understand the disease and what we should expect during his recovery. The BAF also provided an instant community where we could interact with other affected families. From support groups to webinars, to being a part of advocacy efforts and fundraising, the BAF has become an extension of our family and an important partner in Michael’s recovery.”