Personal Stories

Meet Matt

Matt is a husband, father, and professional photographer. Over the past 11 years, he has had surgeries and radiation to remove five benign brain tumors. Following the third surgery, he began to experience more struggles in his daily life. “I think the biggest loss is my relationship to my family. They saw me as the dad and strong. Now they can’t count on me as much. It’s important to support people with brain disease ‘cause it can happen to anybody.’”

Matt D Patient Story

Meet Michele

In 2002, while her young daughter battled a fatal diagnosis of pons glioma, Michele experienced a life-threatening brain hemorrhage when a brain malformation she likely had since birth ruptured. She experienced drastic changes in the way her brain functioned, especially in regard to memory and spatial awareness. Today, Michele is still learning to adjust. “When someone’s brain is not functioning correctly it impacts everything in their life. It impacts how they think, how they feel about themselves, it’s a very hopeless space to be in as a person.”

Meet Sasha

Sasha was diagnosed with epilepsy after sustaining a soccer-related brain injury in high school. Since then, Sasha has worked to find both a treatment that controlled her seizures and a career that fulfilled her desire to care for others. “Life isn’t meant to be lived taking multiple medications and having seizures you can’t control.”

Meet Ken Jr.

Before frontotemporal lobe dementia, sometimes called Pick’s disease, Ken Keene Sr. was a respected community member and a handy man who could fix anything. For his oldest son and namesake Ken Keene Jr., there was nothing his father couldn’t do: “To my family, he was just that super dad. Then all of a sudden he’s reaching out for help.”

Meet Orlena

Orlena was driving with her young daughter in the car when she suffered a stroke because of a rare brain vessel disorder. After two brain surgeries and six months unable to care for her daughter, Orlena began to reclaim her independence and became a Moyamoya advocate.

Meet Kelly

In 2018, Kelly was diagnosed with glioblastoma after an MRI confirmed that a golf-ball-sized tumor above her right ear was affecting the left side of her body. After surgery to remove the tumor, Kelly was able to get through her darkest days with a  healthy dose of humor. Now she is an advocate for other patients living with strokes and brain tumors.

Meet Nancy

When her father was diagnosed with vascular dementia in 2005, Nancy quickly shifted into the role of his caregiver. Nancy and her sisters drew from their individual strengths to provide their father with medical assistance and emotional support until his passing in 2012. At that time, he was diagnosed again with Lewy body dementia. “No matter what your financial situation, there’s probably going to be help out there… Just don’t do it alone, because burning yourself out is not going to help anybody.”

Meet Maureen

Maureen worked as a high school English teacher until she started experiencing a confusing array of symptoms that affected her ability to work, along with her relationships with family and friends. After visiting numerous specialists for years, Maureen received a delayed diagnosis of Lewy body dementia. Now Maureen wants to raise awareness about what life is like with living with this disease. “I felt that I just wanted to offer something to this community that I hadn’t been able to find really”.

Meet Joey

For the first 32 years of his life, Joey experienced seizures from epilepsy. For several years, Joey worked hard in his career as a pipe welder and in construction until his seizures started happening more frequently and intensely. Brain surgery became Joey’s only viable option for treatment. Doctors were unsure if Joey would be able to survive after finding more brain damage than expected, but he surprised everyone by thriving during his post-surgery recovery .

Meet Ben

At age 40, Ben was perfectly healthy and active until he started noticing the early symptoms of a neurological condition that weakened his physical movements. After a 2-year search for his diagnosis of X-linked adrenoleukodystrophy, he began his journey as an advocate for others living with rare diseases. Last year, Ben joined the board of the American Brain Foundation to further his impact.

Meet Morgan

It started with a twinge. After a simple surgery and some physical therapy, Morgan wasn’t getting better. It took two more surgeries before she was diagnosed with Complex Regional Pain Syndrome (CRPS) type II.

Meet Zoe

At 15, Zoe has been navigating her Tourette syndrome diagnosis for eight years. “I had to figure out at a young age how my emotions affect my tics, from good to awful ways. It has been frustrating to figure out on my own and learn to deal with. “This was the first moment in my life where my parents couldn’t fix something for me.