“There is nothing more important than using your voice, to tell your story, to make meaningful change”
On May 7th, 2025 125 brain aneurysm advocates, from 24 different states, gathered on Capitol Hill to do just that. Members from both The Bee Foundation for Brain Aneurysm Prevention and the Brain Aneurysm Foundation, their friends and family members, volunteers and supporters, all joined to conduct 179 meetings with members of Congress. We used our voices and shared our stories to request support for Ellie’s Law, the first Brain Aneurysm bill in Congress.
Ellie’s Law, a bipartisan and bicameral bill, would authorize an additional 20 million dollars annually over five years, totalling 100 million dollars dedicated to brain aneurysm research. This bill would be the first of its kind, in the brain aneurysm space, providing ongoing funding for prevention focused brain aneurysm research. But, why is increased funding for brain aneurysm research so important? Why is Ellie’s Law so vital?
1 in 50 people are unknowingly walking around with a brain aneurysm. 1 in 50. That is 262,796 constituents of Pennsylvania, 788,600 constituents of California, and 165,160 constituents of New York. Across the United States of America, 6.5 million people are at risk for a brain aneurysm rupture. Each year, 30,000 of those will rupture, and only half of those will survive. For many, survivors may experience lasting challenges, such as physical disabilities, cognitive difficulties, and emotional distress, stemming from the traumatic experience. These survivors live with a daily reminder that their lives were forever changed, and those who lost their loved ones never fully recover.
Finding My Voice: An Advocates First Time on the Hill
We heard many powerful testimonies from survivors and from the loved ones of both those who survived and of those who have passed. One powerful story was shared by our newest TBF team member, Alyssa Giacomin:
I was in my first semester of my freshman year at Bucknell University when I got the call. I will never forget where I was, sitting in my Biology 205 study group, when my phone rang. It felt like time had stopped. My mom told me that her sister, my Aunt Missey, had suffered from a brain aneurysm rupture. She had undergone a lengthy and intense surgery, and now we were waiting for her to wake up.
The next day, my dad drove to Bucknell, picked me up, and took me straight to Bryn Mawr Hospital. The moment I walked in, I was met with hugs and tears, as the gravity of what was happening to our family settled in. Aunt Missey lay motionless in a hospital bed, surrounded by tubes, wires, and machines. Her seven siblings were all gathered in the room, just as they had been as kids. Her two daughters clung to each other, grief etched across their faces. Her husband stood nearby, trying to stay strong while facing impossible decisions… decisions no one should ever have to make.
For the next two days, her hospital room became a place of quiet reverence and unwavering love. The door stayed open for a steady stream of family, friends, and coworkers: people from every corner of her life, all drawn there by the impact she had on them. The room was always full, just like her life had been.
Only two weeks earlier, I had seen her during my fall break. We went to the Manayunk Brewery, laughed, caught up, and hugged goodbye with a cheerful “See you at Thanksgiving!” I had no idea that would be the last time I’d talk to her, laugh with her, or feel her arms around me.
On November 3rd, 2019, my Aunt Missey left us and accepted a warm welcome by both of her parents up in Heaven. There is not a day that goes by that our family does not feel this immeasurable loss in our lives. She was the first person you called with good news, and the first to show up when things fell apart. She was always there, until she wasn’t. Our hearts are forever broken because of the devastation that a brain aneurysm caused. That is why I am advocating for Ellie’s Law, so no other family has to feel the pain my family has carried for the past 5 years. So that awareness, research, and early detection can save lives and spare others the kind of heartbreak we now live with every single day.
This is why advocacy matters. This is why we need Ellie’s Law. To prevent these tragedies and to fund research that will save lives and stop the devastation that brain aneurysms leave in their wake. Although sharing my story was incredibly nerve-wracking, I felt empowered knowing that my Aunt Missey’s story has the potential to help create change.
Advocacy in Action
During Advocacy Day, one of our groups met with a staffer in the Senate. In the course of their conversation, they discovered a deeply personal connection: the legislative assistant shared that her grandmother had survived a brain aneurysm rupture. She had witnessed firsthand the trauma and lasting damage these ruptures can cause.
When asked if she had ever been scanned herself, she replied, “No, I haven’t.” Surprised, we asked if she planned to get checked. She looked at us, puzzled. We explained that brain aneurysms often have a genetic component, and those with a family history, like hers, should consider screening.
She was shocked. She had no idea that brain aneurysms could be hereditary or that her family might also be at risk. In that moment, it became clear that our mission extended beyond just legislative advocacy for Ellie’s Law, we were also educating and raising awareness about a life-threatening condition too often overlooked.
Bringing Heart to the Hill
One of our advocacy groups met with a legislative aide from the House of Representatives who immediately expressed deep concern about brain aneurysms. As the team introduced themselves, he shared that there were three medical issues he feared most: strokes, heart attacks, and brain aneurysms.
His honesty opened the door to a meaningful conversation. We walked him through the warning signs and symptoms of aneurysms, discussed preventative measures like getting an MRA, and encouraged him to speak with his doctor—especially about any family history.
While he assured us that his office already planned to support Ellie’s Bill because of its critical importance, we were also able to offer him something more personal: peace of mind. In addition to advocating for legislation, we were raising awareness and helping individuals feel empowered about their own health.
Your presence, voice, and advocacy play a crucial role in raising awareness and driving meaningful change. Every story shared and every conversation had, brings us closer to preventing the devastation caused by brain aneurysms. We are deeply inspired by the passion and dedication each of you brought to the Hill, and we are proud to be standing together in the fight for brain aneurysm prevention. We are one step closer to accomplishing our mission: to live in a world where brain aneurysms can be found prior to rupture so that lives will be saved and the devastation they cause eliminated.
On behalf of The Bee Foundation for Brain Aneurysm Prevention, thank you for your incredible support & participation in the 2025 Brain Aneurysm Advocacy Day on Capitol Hill. We look forward to coming together again next year!
