Brain Aneurysm Foundation BAF Changemaker: Debbi Lorge
Debbi Lorge from Manitowoc, Wisconsin with her daughter Kati.
Debbi Lorge’s story is one of unimaginable loss. After losing both her sister Janet and, years later, her daughter Kati to brain aneurysms, Debbi and her family chose to honor their memories by raising awareness and supporting lifesaving research. From advocating for greater understanding of hereditary risk to funding a yearly Chair of Research in Kati’s name, Debbi has become a powerful voice in the fight against brain aneurysms—driven by hope for a future where no other family has to experience the same heartbreak.
BAF: Tell us a little about your connection with brain aneurysms.
DL: When I was 37, my older sister Janet passed of a brain aneurysm at the age of 60. This was my first experience with the disease. Having no prior knowledge of aneurysms I turned to my doctors with questions. This is when I learned that they can be hereditary. I asked if I could be scanned, unfortunately I was told insurance wouldn’t cover it simply because I was nervous. Brain aneurysms wouldn’t play much of a part in my life after that, until my daughter Kati was old enough to start asking questions about what happened to her aunt. From that conversation on, Kati always had a fear of aneurysms. Her fears became all to real years later when she was 28. In August of 2020 she experienced the worst headache of her life. At the urging of her life partner Travis, she went to the doctor. After a long day of testing, she was informed that she did indeed have a Brain Aneurysm. Due to covid being at its height during the time, she wouldn’t be able to schedule a follow up with a neurologist for more than 2 weeks. Five days before her appointment, on September 5th, 2020, Kati would pass.
BAF: When did you first learn about the BAF?
DL: It didn’t take long after Kati’s passing for some of her friends to become interested in advocacy and trying to make something positive come out of this tragic event. This is when our family was introduced to the BAF. Since then, it has been an integral part of our lives.
BAF: Have you participated in any BAF events? What did that experience mean to you?
DL: We have had the honor to attend several Research Symposiums over the past few years to see Kati’s Chair of Research grant be awarded. We have also been able to organize several local fundraising events in direct support of the BAF to help to fund her chair. This year my son Patrick, and I wanted to do something more personal for Kati’s birthday. We came up with an axe throwing event at one of our favorite local establishments and called it “Axe’s for Aneurysms.” We originally thought it wouldn’t be more than just a couple of close friends and family getting together to have some fun, raise some money, and spread awareness. When we shared the idea with some of Kati’s closest friends it quickly evolved it something much bigger. We decided to establish the Kati Legacy Fund (KLF). With the newly founded KLF team behind us, we were able to put together a very successful event. We were able to far surpass our donation goal as well as spread useful information to hundreds of new people. We hope to be able to have many future KLF events to keep supporting the BAF and spread awareness about brain aneurysms.
BAF: How do you explain the importance of brain aneurysm awareness to people who may not know much about it?
DL: So many people underestimate how prevalent brain aneurysms truly are. Most people believe them to be incredibly rare, something that could never happen to them. Having lost two of the most important people in my life to them, I always try to stress how untrue that is.
I make it clear that it is crucial to know your family history and stay proactive when it comes to your health.
BAF: What does the BAF community mean to you?
DL: The BAF community means so many things to me. At the top of the list, it represents support and hope. Personally, I have been given more support from the incredible BAF team than I ever thought imaginable. It has also given me a chance to connect with other individuals who have shared experiences. The BAF community also makes me hopeful that a future exists where no one else needs to lose a loved one to this disease. Every year at the research symposium I am overcome with hope. It’s an incredible experience to be able to see the direct impact of not only Kati’s Chair of Research, but so many others. Without the BAF community, I wouldn’t have the opportunity to meet the teams and see the research that is being done.
BAF: If you could share one thing with the world about brain aneurysms, what would it be?
DL: This needs more awareness. Don’t underestimate how common they can be. 1 in 50 people in the United States have an unruptured brain aneurysm. They are too prevalent and devastating to not be taken seriously. Learn the signs and symptoms, learn your family history.