BAF Changemaker: Allie Bedell

Allie Bedell (R) from Londonderry, NH and BAF Co-founder Dede Buckley at the 2024 New England Run/Walk

In August 2017, Allie Bedell’s father, Larry, experienced a sudden brain aneurysm rupture, leading to emergency surgery and a challenging recovery. This event prompted Allie and her family to learn more about brain aneurysms and get involved with the Brain Aneurysm Foundation. Allie has participated in several events, advocated for awareness and legislation on Capitol Hill, and engaged in fundraising efforts to support research. This spring, Allie and her team raised $15,000 while participating in the 2024 New England Run/Walk.

Allie with Dr. Ogilvy (2nd from Left) and her team advocating on Capitol Hill.
BAF: Tell us a little about your connection with brain aneurysms.

AB: In August of 2017 my dad had a totally normal weekend. He played 18 holes of golf, biked, and did all of the things a healthy dad does. In the middle of the night, he woke up and felt a pop and developed a headache – the only warning sign that anything was wrong. Later that day when he still wasn’t feeling well, my mom made him go to the emergency room and we learned that he had a ruptured brain aneurysm. After emergency and experimental surgery, an extended stay in the neuro ICU, and lots of recovery later, he survived and lives a very normal life.

Prior to my dad’s aneurysm rupture, our family knew very little about brain aneurysms, including how common they are and the risks associated with them. Since 2017, we’ve heard time and time again from friends and neighbors about their own experiences with brain aneurysms. Oftentimes, we hear about families that were not as fortunate as ours who after an aneurysm rupture are faced with extraordinary challenges.

Because of my dad’s good outcome and our new knowledge about brain aneurysms, our family has worked to support the Brain Aneurysm Foundation and to spread the word about risks and warning signs of aneurysms.

BAF: When did you first learn about the BAF?

AB: We first heard about the Brain Aneurysm Foundation from Dr. Ogilvy, who was the surgeon who saved my dad’s life. While my dad was under Dr. Ogilvy’s care, he told us about the BAF and the work they do.

We found out how fortunate we were for my dad to have wound up in Dr. Ogilvy’s hospital!

Allie and her family at the 2022 New England Run/Walk in Boston, MA

To celebrate the 5th anniversary of my dad’s successful surgery, we participated in the New England Run/Walk as a family to take the next step in getting involved. Since then, I’ve had the opportunity to not only participate in two more New England Run/Walks, but have advocated for Ellie’s Law on Capitol Hill for Advocacy Day and served on BAF committees to help find new ways to broaden our reach. As I’ve gotten to know the BAF community more, I’ve met so many incredible people whose lives have been touched by brain aneurysms in very different ways, but who are all working toward a future with fewer aneurysm deaths.

BAF: Why is it important for you to be an advocate for the BAF community?

AB: Being involved with the Brain Aneurysm Foundation is so important because awareness and research are the keys to reducing aneurysm deaths. Aneurysms can be incredibly easy to deal with when they’re caught pre-rupture, so it’s important to teach people what to look out for and how to advocate for themselves in doctor’s offices where many aneurysms are misdiagnosed.

Funding research helps advance the ability to identify aneurysms early and creates better treatment post-rupture. When my dad’s aneurysm ruptured, he underwent an endovascular procedure to repair the aneurysm that was cutting edge and very new. It was the option most likely to save his life, but there weren’t many others who had survived this surgery. Fast forward a few years, and I’ve met several rupture survivors who have had the same procedure and it’s now commonly used. These advances in medicine save lives, but they also require time and funding of research to be developed. The Brain Aneurysm Foundation has a critical role in supporting research because brain aneurysm research is vastly underfunded.