Written by Nicki Mohammadi
Many know Emilia Clarke as Daenerys Targaryen, the strong willed mother of Dragons from HBO’s Game of Thrones. Fewer fans realize that, during filming, Emilia Clarke suffered a subarachnoid hemorrhage, a type of stroke that can be caused by a ruptured brain aneurysm. The hardships she faced underneath her fantasy roll were described in a powerful editorial she published in the New Yorker in March of 2019. She was hospitalized for over 30 days, twice.
Even fewer individuals know what a brain aneurysm is, or the magnitude of devastating effects that follow once an aneurysm ruptures. A brain aneurysm is the result of a weakness in a blood vessel that leads to a bulge or ballooning of the vessel wall. Generally, an aneurysm does not cause any symptoms unless and until it bleeds, which can be devastating. Every 18 minutes, a brain aneurysm ruptures somewhere in the world. One in 50 people in the U.S. have an unruptured brain aneurysm and four out of ten people with a ruptured brain aneurysm will die as a result. Yet, federal funding for this disease is disproportionately small, amounting to only $0.83 per year on brain aneurysm research for each person afflicted with a brain aneurysm.
One foundation is determined to change that. Fueled by the sudden loss of their cousin Jenny Sedney to a ruptured brain aneurysm, Philadelphians Erin Kreszl and Christine Doherty have created The Bee Foundation. Its mission is to support groundbreaking research to better detect brain aneurysms before they rupture and prevent rupture once they are discovered. Their work focuses on increasing brain aneurysm awareness and education to argue for more resources to support scientific research between unruptured brain aneurysm diagnosis and treatment.
Part of The Bee Foundation’s mission has been accomplished by their relentless advocacy on Capitol Hill. Ellie’s Lawis a bill in remembrance of Ellie Helton a 14-year old who passed away in 2014 due to a brain aneurysm rupture. The law aims to improve federal funding devoted to brain aneurysm research.
Given the current lack of federal support, a large amount of research funding in the US is currently being provided by private foundations. In addition to currently supporting projects focused on designing a blood test to diagnose brain aneurysms and better understanding the cellular damage that happens in the artery wall that leads to formation of a brain aneurysm, The Bee Foundation also supports research that can help directly address the scarcity of federal funding. As a result, the Bee Foundation is invested in understanding the financial implications of a brain aneurysm and the burdens associated with an aneurysm rupture. They have established a novel fellowship, the “Brain Aneurysm Health Economics” fellowship quantifying the financial impact of the rupture of a brain aneurysm. This fellowship is a unique opportunity to shine light on the enormous burden of this disease, which is poorly understood by all parties involved. The study directly partners with affected patients and their caregivers to obtain first hand information about the aneurysm rupture journey and indirect costs. It also provides a young scientist with the opportunity to receive direct mentorship from cerebrovascular neurosurgeon Dr. Christopher P. Kellner at the Icahn School of Medicine in New York City, the principal investigator of The Bee Foundation’s Cost of Illness study.
An essential avenue for the collection of funds that make possible projects like these is The Bee Foundation’s annual fundraising dinner. Last month, the Bee Foundation held their annual Honey Bash Ceremony, raising over $240,000 while simultaneously raising awareness of this silent killer. Hosted in Philadelphia, the Honey Bash attendees included renown physicians in fields of Neurosurgery and endovascular surgery as well as patients, families, and advocates. Among the speakers were recipients of The Bee Foundation research grants. As emphasized throughout the night, an aneurysm rupture comes with a heavy cost that goes beyond simple dollars amounts. This year’s Cost of Illness fellow, Nicki Mohammadi, presented the preliminary findings and next steps for this project in occasion of The Bee Foundation’s annual fundraising dinner. Sharing her personal experience interacting with patients, she emphasized that an aneurysm rupture is an all encompassing emergency for both the patient and family.
What follows is often a prolonged and costly hospitalization, for the patients who are then discharged, a challenging recovery journey.Her words echoed those of Dr. Jabbour, professor of Neurological Surgery and Head of the Division of Neurovascular and Endovascular Neurosurgery at Jefferson University joined the Scientific Advisory Board for the Bee Foundation. Dr. Jabbour touched on the importance of research and the key roles of advocacy, awareness and support for people with aneurysms: life after a ruptured aneurysm is not the same, with impacts hanging heavily on patients as well as on their caregivers.
Other attendees at the gala included Dr. Edgar A. Samaniego a professor of Neurology, Neurosurgery and Radiology at the University of Iowa. He uses a multi-faceted approach collaborating among three different departments to better understand the morphology of an aneurysm and what predicts its rupture.
Dr. Louis Kim an award winner that night, is the Vice Chairman of Neurological Surgery at the University of Washington and he addressed the role medicine can play if we could identify aneurysms early on. This has led him to look into the role genetics plays in aneurysm formation and his hope is to find molecular biomarkers that can help lead to less invasive procedures for aneurysms. He is already incorporating this approach in his research by obtaining samples through the less invasive approach of endovascular treatment as opposed to surgery. Dr. Kim’s goals includes creating a cost-effective approach to diagnosing and treating a brain aneurysm. Dr. Kim shared that “The Bee Foundation grant has made it possible to launch our groundbreaking work–to discover the causative genes in brain aneurysm formation. Without out their support, our research would be delayed, or worse, postponed. I am grateful to TBF for sharing the common vision of a world without ruptured cerebral aneurysms. I was fortunate to attend the Honey Bash in October where I witnessed firsthand the founders’ tremendous enthusiasm to bring brain aneurysm research to the forefront. Thank you to The Bee Foundation!”
All in all some of the focuses of the Bee Foundation and its diverse team are to create more diagnostic approaches to aneurysms to be able to prevent them in the future. Alongside this the hope is to create cost-effective diagnostic approaches and gather a better understanding of the overall costs of this devastating disease.