Thomas and Mary Evslin Hear the Sound of Hope

“When our granddaughter Lily was born,” says Mary Evslin, “she was tested for lots of things, including hearing. She flunked the hearing test. The hospital staff reassured her parents: ‘It happens all the time; take her to a pediatrician for a retest.’ She flunked again. Off they went to a pediatric hearing specialist, and she flunked again. We all got worried.”

Those worries were well founded. DNA testing revealed Lily’s hearing loss was caused by a mutation in the connexin gene, which disrupts potassium flow in the inner ear. The bad news—the hearing loss might get worse. The good news—it was nonsyndromic: Lily was likely to be spared other serious problems.

Says Mary, “Tom and I began searching the Web to find the most promising research. We called researchers and talked with them about their work. And then we found a video of Dr. Heller. We felt an instant sense of connection.” Stefan Heller, PhD, the Edward C. and Amy H. Sewall Professor III in the School of Medicine, had discovered stem cells in the inner ear. After a phone conversation, the Evslins flew from their home in Vermont to meet with Heller. “He spent two hours with us and Lily’s father, and was so passionate about his research that we became believers. He needed support from entrepreneurial families who understand that even the best early plans usually take different directions than originally anticipated.”

For the Evslins, high-tech entrepreneurs who founded a company that pioneered the use of the Internet for telephone calls, Heller’s vision was compelling. Through their family foundation, they pledged $330,000 to fund start-up costs for a five-year research project, “Therapeutic Strategies for Complex Inner Ear Disorders,” with a goal to bring a cure for hearing loss to clinical trial within the next decade. The project has significant implications for children like Lily, but as Mary points out, hearing loss affects a much wider population, “from aging boomers to injured veterans.”

 It’s a privilege for our family to be involved.

Heller has been energized by the show of support. “Research on the nonsensory cells of the inner ear is typically not well funded, but these cells are as important for hearing as the famous sensory hair cells,” says Heller. “The Evslins’ support is allowing us to start serious exploratory research on hereditary hearing loss affecting these non-sensory cells. This is unprecedented for our field, and because we focus directly on mutations that affect many people with hearing loss, I believe that the Evslins’ gift will have a big impact in a couple of years.”

Says Mary Evslin, “The beauty of family foundations like ours is that we can make decisions over the kitchen table. We all have our causes, our passions. If we think we can make a significant impact and there’s a team, like Dr. Heller’s, that can accomplish the task, we can fund it. It’s a privilege for our family to be involved.”

For more information on Dr. Heller’s work and the Stanford Initiative to Cure Hearing Loss, please go to hearinglosscure.stanford.edu.