Jennifer Bischoff

“At just 2.5 years old, my life took a unique path with a diagnosis of optic glioma, a rare tumor located behind my left eye. The tumor caused significant vision deterioration in that eye and led my parents to a desperate search for a solution. It was this determination that brought my parents to the tumor review board at Children’s Hospital, where they fought for my inclusion in an experimental chemotherapy program. Unfortunately, we faced a devastating rejection. Refusing to give up, my parents brought my case before another tumor review board at the University of Chicago. This time, the board approved the treatment despite being the first of its kind for someone so young. Thankfully, the therapy was successful, shrinking my tumor and preventing it from affecting my right eye. This once-experimental treatment is now a standard of care across the country—a result of my parents’ courage and the commitment of my medical team.

Since then, I have remained deeply involved in the neurofibromatosis (NF) community, working alongside my family to raise fun and awareness. Some of my most vivid memories are from plant sales, community walks, and events that brought together others affected by NF.

At 16, my NF condition took another turn with the onset of grand mal seizures. These seizures marked the beginning of another chapter filled with doctors’ appointments, medication trials, and adjustments to my daily life. After many efforts, I found a combination of rescue medications that could help manage the seizures, though I still face side effects like tiredness, nausea, and dental issues.

At 29, I had a particularly severe seizure while driving, leading to a car accident that landed me in the ICU. Due to the unpredictability of my seizures, I no longer drive, which has reshaped my independence, relying instead on walking, public transit, or the help of friends and family. My NF diagnosis and ongoing health conditions also mean I can’t work full-time despite my aspirations.”

While Medicare helps cover some costs, its lack of dental coverage has meant high out-of-pocket costs for dental care—an ongoing need due to the effects of seizure medications. Jennifer had an upcoming dental surgery that B Kind paid for.

“My journey has been filled with challenges but has also fostered a strong sense of community and purpose. My family and the NF community continue to be a source of strength and resilience. Together, we are part of something greater than ourselves, working to bring light to the complexities of living with NF and ensuring that no one faces these challenges alone.”