Meet Tom S.
Tom suffers from dystonia, a painful neurological movement disorder with no known cure. When he first started experiencing strange pains and cramps in his neck muscles, he saw chiropractors and physical therapists—but when this didn’t help, Tom started down a long and painful road to an eventual diagnosis. Before his diagnosis at 30 years old, Tom was an athlete and an entrepreneur, but as his symptoms worsened, even performing everyday tasks became a challenge. Before long, the pain became debilitating. Over time, Tom learned to accept his new limitations and focus on his physical and mental health.
Meet June and Ron
A few weeks after bringing their daughter Yael home from the hospital, parents Ron and June became concerned when her physical development didn’t seem to align with typical newborn milestones. However, doctors were not familiar with her rare disease, and reaching a diagnosis took determination. After Yael, who they lovingly called Yaya, was diagnosed with 4H leukodystrophy, the two determined parents have advocated for their young daughter’s care and started a foundation in her honor.
Meet Mary Jo
When she was in her early 30’s, Mary Jo’s relationship with her parents was forever altered by brain disease. Her father suffered a subdural hematoma, was diagnosed with diabetic neuropathy, and experienced a stroke while her mother was diagnosed with Alzheimer’s and dementia. “They’re a responsibility that I have to take care of as they have taken care of me.”
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.’”
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.”
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.”
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.
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.
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.”
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”.
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 .
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.
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.
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.