Diagnosed with Usher syndrome decades ago, Martha Steele didn’t join FFB until 2008. But she’s been making up for lost time.
Martha Steele is a scientist, a trained toxicologist whose job as deputy director for the Bureau of Environmental Health at the Massachusetts Department of Public Health has her overseeing everything from food-poisoning cases to environmental investigations of nuclear power plants.
The 61-year-old also has Usher syndrome, which causes hearing and vision loss. So it took scientific evidence — presented at a Vision Seminar in Boston five years ago — to convince her the time had come to adopt the Foundation’s mission as her own.
And, indeed, she has. “Martha has reinvigorated the Boston region by focusing not just on the city but its suburbs as well,” says Maria Costa, FFB’s director of development for the northeast region. “She’s hosted a chapter speaker series presentation and developed a new networking group in Arlington. It’s a great example of what’s happening nationwide — people affected by retinal diseases taking charge and encouraging others to either become involved or get more involved.”
Martha admits that, before the seminar, “I hadn’t been following the research. But there was clearly a lot of excitement from the researchers talking about gene, drug and stem cell therapies and upcoming clinical trials. So that led me, initially, to get involved with the Foundation through VisionWalk.”
This year, she chaired the Boston VisionWalk for the fourth year in a row. And her team, Strides for Eagle Eyes, brought its grand total, over five walks, to $120,000. As the Boston Chapter’s president, she has also reinstituted the region’s speaker series – meetings featuring local research and low vision specialists. She began in February with a presentation by Dr. Eric Pierce, who is associate director of the Foundation-funded Berman-Gund Lab for the Study of Retinal Degenerations at Harvard University. “That was on a week night, and it was jammed, with more than 100 people,” Martha recalls.
Other speaking events are scheduled for the fall and winter, as are monthly networking group meetings at a local public library. “We had our first one in July,” Martha says. “It’s a way to reach out to those affected, and keep them informed about research and support them. We meet if it’s just one person or 16. I want people to know these group meetings won’t go away.”
So why the momentum now, even though Martha, who began wearing hearing aids at age 5, was diagnosed with Usher syndrome 30-odd years ago? The answer, in part, is technology. Over the past several years, Martha’s vision has deteriorated considerably, preventing her from lip-reading, once her principal means of “hearing.” A few years ago, however, Cochlear implants changed all that, as did a recent stint at The Carroll Center for the Blind, where she trained in state-of-the-art visual strategies.
Martha’s also been energized by the response to her annual VisionWalk appeals. Working with a list of roughly 500 connections, ranging from childhood friends to people with whom she does business, she sends out a letter sharing the vision loss she experienced over the previous year. “The bottom line,” she says, “is people are donating I think not so much to FFB as they are to support me.”
But it’s the Foundation’s work that motivates Martha, who was recently elected an FFB National Trustee. “I’m impressed with the breadth of research projects in clinical trials right now,” she says. “I don’t think anything big will happen next year or the year after. But within the next decade, it will.”