Jill Dopf Viles — a self-taught genetic detective and one of the most inspiring people I’ve ever known — passed away last month in Gowrie, Iowa. She was 50 years old.

Her story touched lives around the world, and it all started with one email that changed everything.

A Bold Email with a Big Claim

Back in 2013, after I appeared on Good Morning America to talk about my book The Sports Gene, Jill saw the segment and felt compelled to reach out. Her email subject line was impossible to ignore:

“Woman with muscular dystrophy, Olympic Medalist—same mutation.”

At first, the idea seemed far-fetched. But when I opened the email and looked at her attached packet, I saw something different — something compelling, smart, and full of detail.

A Remarkable Genetic Discovery

Jill believed that she shared a rare genetic mutation with Canadian Olympic hurdler Priscilla Lopes-Schliep. Even though the two women looked nothing alike, Jill pointed out subtle clues in body fat distribution. She suspected that Priscilla’s athletic body had somehow “bypassed” the muscle problems Jill suffered from.

I helped connect the two, and after testing, it turned out Jill was right. Both women had mutations in the same gene — just in slightly different places. This discovery helped Priscilla get important medical treatment she had been missing, and it validated Jill’s theory in a big way.

From Rare Disease to Scientific Breakthrough

Jill had two incredibly rare conditions:

• Emery-Dreifuss muscular dystrophy, which causes muscle weakness and wasting

• Partial lipodystrophy, which leads to abnormal fat loss from parts of the body

For years, doctors said she had neither. But Jill trusted her own instincts and kept researching. Eventually, researchers began studying her genome. In fact, scientists engineered fruit flies with Jill’s mutation — and named them “Jill flies.”

At first, these flies couldn’t move well. But when scientists increased one specific protein, the flies started to move normally. It was a huge step toward possible treatment for others like Jill.

The Struggles She Faced Growing Up

Jill’s childhood and teen years were filled with challenges. She often fell at school. Kids teased her about her body. Doctors misunderstood or dismissed her symptoms.

One painful memory involved a photo session meant to document her posture. She later wrote:

“Maybe black bars are printed over the patient’s eyes not to protect them — but to protect the doctors from seeing the humanity in front of them.”

Finding Love and Building a Family

Despite her condition, Jill lived fully. She used humor and hope to navigate online dating and eventually met her husband, Jeremy.

She described one touching moment at the Iowa State Fair. When she asked why he was taking so long to choose a game, Jeremy said:

“I’m trying to find one you can play.”

It brought her to tears — for the right reasons.

Jill gave birth to a son, Martin, who did not inherit her genetic condition. She worried people might judge her for the decision to have a child. But the love and life they shared speak volumes.

Helping Others Around the World

After her story aired on This American Life in 2016, Jill became a guide to others with undiagnosed conditions. She even helped a man in Pakistan get a genetic test after he sent her a video of himself struggling to stand.

She worked from a small office in Iowa, but her reach was global.

A Final Chapter of Courage

Toward the end of her life, Jill became eligible for an experimental gene therapy. She understood the risks. With her husband and son in mind, she chose not to take it.

In April, she traveled to Chicago for a wedding, looking vibrant and strong. Just weeks later, she passed away from pneumonia. Her mother said Jill had been too weak to call me, saying:

“I want my voice to be stronger before I call David.”

But to me, her voice was already strong — and unforgettable.

Jill’s Legacy Lives On

Jill Viles wasn’t just a patient — she was a pioneer. Her book, Manufacturing My Miracle, is a must-read story of resilience, intelligence, and compassion.

From helping unlock mysteries in genetic science to inspiring people around the world, Jill made the impossible possible.

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