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NIH Record - National Institutes of Health

NCATS Challenge Winner

Poet with FA Finds Hope in Music, Faith

A screenshot of Thompson, wearing a black sweatshirt, seated on his couch at home, speaking on videocast.

Jacob Thompson speaks about his rare disease: “My life has a bigger purpose.”

Jacob Thompson played baseball growing up and had dreams of going pro. But those dreams were dashed during high school. Once an athletic kid, his muscles were beginning to atrophy.

Thompson started turning to other outlets, ones where he might help and inspire others. He began coaching and volunteering and became active in youth ministry. He also found creative outlets in music and poetry.

After college, Thompson got married, began working with a record label and continued mentoring and coaching kids. Everything was going well, until he began feeling unwell: nausea, fatigue, dizzy, spells of vertigo. And his balance was getting worse. This began a journey of physical therapy, MRIs and other tests. Then came the diagnosis: Friedrich’s Ataxia. 

Thompson learned he was born with FA, which was slowly eroding his physical abilities. Doctors told him in the coming years, he’ll end up in a wheelchair. There’s still no effective treatment for this rare disease. 

“This was hard news to hear at age 24, when it seemed I had my whole life ahead of me,” said Thompson, during NIH’s Rare Disease Day virtual event. “Anybody in that place, just know you’re not alone. Never give up hope.”

When he first learned about his rare disease, Thompson said he felt hopeless, ruminating about all the things he’d never do in life. But he found comfort in his faith and continued to pray. He also dove back into his music and poetry, realizing the messages of perseverance in his lyrics were not just for others, but also for himself.

Thompson, in white shirt, sings into a microphone with spotlight behind him.

Thompson performs Keep on Fighting, which earned him first place in the NCATS 2020 Rare Diseases are Not Rare Challenge.

“Rare disease came and knocked me off track; but I won’t be defeated. Instead, I fight back,” he utters during a hip-hop video called Keep on Fighting, an entry that earned him first place in the NCATS 2020 Rare Diseases are Not Rare Challenge. The nationwide annual competition aims to raise awareness about rare diseases and highlight the need for research and new treatments.

Today, Thompson runs a high school mentoring program and coaches football and basketball. He continues recording music. And, he and his wife are busy raising their young son.

“My life has a bigger purpose that FA can’t take away,” said Thompson. “I made a commitment that no matter what happens, I’m gonna keep fighting.” —Dana Talesnik

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