Intracranial Aneurysm

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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. Continue Reading Advocates on Capitol Hill for the 11th Annual Brain Aneurysm Foundation Advocacy Day - March 2023. 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." ABOUT BRAIN ANEURYSMS A brain aneurysm is a weak, bulging area in an artery in the brain that, in some instances, can rupture. Blood then spills into the space between the skull and the brain, which is a serious type of stroke known as a subarachnoid hemorrhage. While brain aneurysms are most prevalent in people ages 35 to 60, they can also occur in children. Women over the age of 55 have a higher risk of brain aneurysm rupture than men and are generally at greater risk. Brain aneurysms are also seen at higher rates in African American and Hispanic populations. ABOUT THE BRAIN ANEURYSM FOUNDATION Founded in Boston and now based in Hanover, Massachusetts, the Brain Aneurysm Foundation is the globally recognized leader in brain aneurysm awareness, education, support, advocacy, and research funding. The foundation's mission is to provide information about and raise awareness of the symptoms and risk factors of brain aneurysms to prevent ruptures and subsequent death and disability; work with medical communities to provide support networks for patients and families; and advance research to improve patients' outcomes and save lives. Established in 1994, the foundation has a Medical Advisory Board that comprises more than 40 of the world's foremost aneurysm experts — neurologists, neurosurgeons, interventional neuroradiologists, and other brain aneurysm specialists — from leading hospitals and universities. For more information about the Brain Aneurysm Foundation, please visit bafound.org or follow us on Facebook, Twitter, Linkedin, Instagram, and YouTube. Media Contact: Lynn Nutall Director of Marketing and Communications Brain Aneurysm Foundation 617-543-3921 [email protected] SOURCE Brain Aneurysm Foundation

Key Additions Extend Foundation's Global Reach; Will Support the Organization's Disease Education Efforts and Research Initiatives Aimed at Preventing Ruptures and Broadening Treatment Options HANOVER, Mass., Jan. 10, 2024 /PRNewswire/ -- The Brain Aneurysm Foundation (BAF), the leading advocacy organization supporting education, research, and policy to transform the treatment of brain aneurysms, today announced it has appointed to its Medical Advisory Board Carlos Baccin, M.D., an interventional neuroradiologist and Director of the Institute of Radiology and NeuroIntervention in São Paulo, Brazil, and Nima Etminan, Professor and Chairman of the Department of Neurosurgery at University Hospital Mannheim, in Germany. Continue Reading Dr. Carlos Baccin and Dr. Nima Etminan The BAF's medical advisory board plays a central role in supporting the Foundation's education and research initiatives, providing new data to better understand the causes of brain aneurysms and insights into scientific advances and innovations that may have the greatest patient impact. 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. "We are thrilled to have these distinguished leaders join the BAF, and I expect we will benefit greatly from their decades of experience as we work to build awareness for the disease and target promising areas of research where our funding can have the greatest impact," said Christine Buckley, executive director of the BAF. "I look forward to broadening our advocacy work globally and to provide education and support to individuals, families, and those on the front lines of patient care." Dr. Baccin is a senior member of the World Federation of Interventional and Therapeutic Neuroradiology (WFITN) and the Society of Neurointerventional Surgery (SNIS) and an associate member of the Congress of Neurological Surgeons (CNS). He received his training in interventional radiology at Columbia Medical Center/New York Presbyterian Hospital and in interventional neuroradiology at Harvard Medical School/Massachusetts General Hospital. He was on the Neurosurgery faculty at Beth Israel Deaconess Medical Center in Boston and was an instructor in Neurosurgery at Harvard Medical School. "It is an honor to join the BAF's medical advisory board, and I believe our efforts will have an important impact in Brazil and globally as we promote awareness and education and strengthen partnerships between patients, physicians, healthcare professionals, and researchers," said Dr. Baccin. "I have long been impressed by the educational work of the BAF and its unparalleled support for potential ground-breaking research projects." Dr. Etminan is clinically specialized in cerebrovascular surgery and skull-base surgery, and his research is focused on unruptured intracranial aneurysms, including novel strategies for assessment and treatment. He is also an investigator for clinical studies on aneurysmal subarachnoid hemorrhage. He is the current chair of the European Stroke Organization Guideline (ESO) group on Management of aneurysmal Subarachnoid Hemorrhage, and recently co-chaired the ESO guideline for the management of unruptured intracranial aneurysms. Dr. Etminan has published over 120 papers in leading medical journals, primarily in the field of unruptured intracranial aneurysms or aneurysmal subarachnoid hemorrhage. "I believe the experience, network, and infrastructure of the BAF makes them a key partner in our ongoing and future efforts in providing knowledge and raising awareness for aneurysm patients and their burden in Europe and Germany," Dr. Etminan added. A brain aneurysm is a weak, bulging area in an artery in the brain that, in some instances, can rupture. Blood then spills into the space between the skull and the brain, which is a serious type of stroke known as a subarachnoid hemorrhage. While brain aneurysms are most prevalent in people ages 35 to 60, they can also occur in children. Women over the age of 55 have a higher risk of brain aneurysm rupture than men and are generally at greater risk. Brain aneurysms are also seen at higher rates in African American populations. ABOUT THE BRAIN ANEURYSM FOUNDATION Founded in Boston and now based in Hanover, Massachusetts, the Brain Aneurysm Foundation is the globally recognized leader in brain aneurysm awareness, education, support, advocacy, and research funding. The foundation's mission is to provide information about and raise awareness of the symptoms and risk factors of brain aneurysms to prevent ruptures and subsequent death and disability; work with medical communities to provide support networks for patients and families; and advance research to improve patients' outcomes and save lives. Established in 1994, the foundation has a Medical Advisory Board that comprises more than 40 of the world's foremost aneurysm experts — neurologists, neurosurgeons, interventional neuroradiologists, and other brain aneurysm specialists — from leading hospitals and universities. For more information about the Brain Aneurysm Foundation, please visit bafound.org or follow us on Facebook, Twitter, Linkedin, Instagram, and YouTube. Media Contact: Lynn Nutall Director of Marketing and Communications Brain Aneurysm Foundation 781-826-5556 x 208 [email protected] SOURCE Brain Aneurysm Foundation