To fix heart conditions, a company is using gene therapy plus patient voices

To fix heart conditions, a company is using gene therapy plus patient voices

As gene therapies and small molecule drugs are being studied in clinical trials, companies increasingly see the value in hiring patients to help explain the potential benefits.

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As a child, Wendy Borsari participated in a health study at Boston Children’s Hospital. She was involved because heart disease and sudden cardiac arrest ran in her family as far back as seven generations. When she was 18, however, the study’s doctors told her that she had a perfectly healthy heart and didn’t have to worry.

A couple of years after graduating from college, though, the Boston native began to experience episodes of near fainting. During any sort of strenuous exercise, my blood pressure would drop instead of increasing, she recalls.

She was diagnosed at 24 with hypertrophic cardiomyopathy. Although HCM is a commonly inherited heart disease, Borsari’s case resulted from a rare gene mutation, the MYH7 gene. Her mother had been diagnosed at 27, and Borsari had already lost her grandmother and two maternal uncles to the condition. After her own diagnosis, Borsari spent most of her free time researching the disease and “figuring out how to have this condition and still be the person I wanted to be,” she says.

Then, her son was found to have the genetic mutation at birth and diagnosed with HCM at 15. Her daughter, also diagnosed at birth, later suffered five cardiac arrests.

That changed Borsari’s perspective. She decided to become a patient advocate. “I didn’t want to just be a patient with the condition,” she says. “I wanted to be more involved with the science and the biopharmaceutical industry so I could be active in helping to make it better for other patients.”

She consulted on patient advocacy for a pharmaceutical and two foundations before coming to a company called Tenaya in 2021.

“One of our core values as a company is putting patients first,” says Tenaya's CEO, Faraz Ali. “We thought of no better way to put our money where our mouth is than by bringing in somebody who is affected and whose family is affected by a genetic form of cardiomyopathy to have them make sure we’re incorporating the voice of the patient.”

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