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By Katrina Margolis
Hometown Weekly Reporter
On Wednesday, dozens of people gathered in front of the Needham Town Hall for the first ever Winter Solstice USH Awareness Walk, held by Arts for USH. Jan Weinshanker and Nancy Corderman are the two co-founders of the non-profit who organized and sponsored this event. “The first time we’ve done something in the community like this,” Jan explained. “Over the summer, there was the equinox. National Usher Awareness Day is the third Saturday in September, so we did a big event for the equinox. We decided this year for the winter solstice we should celebrate this too, the longest day of the year, and now the darkness turns into light.”
Previously, the organization focused mainly on children and arts events. “It’s been mostly art events. We go into schools and all kinds of venues like after-school programs and hospitals and we hold art parties; traditionally it’s been for children,” Jan explained. However over the past year, their focus has shifted entirely towards Usher Syndrome after two of Nancy’s children were diagnosed. Usher Syndrome used to be incredibly difficult to diagnose, which is the reason Nancy’s children only found out recently. “We didn’t have any idea what it was or that her eyesight issues could ever be connected to her hearing loss. It shows up very, very differently, and there are different types. USH 1, you’re born deaf and then at some point your eyesight starts to go. My kids have USH 2, and then there’s also USH 3, so there’s all different types,” she explained. “The only way to detect it is genetic testing, so they’re actually able to diagnose it much earlier now because they do newborn screenings. It’s very different now than it was when my children were born.”
Within the town square were 30 portraits, illuminated by a single light. “All of these are portraits of people with Usher Syndrome, and what we’re doing is we’re shining a light, bringing awareness, by taking portraits of people all around the world and giving a face and a voice to Usher Syndrome,” Nancy said. “To create empathy is our foremost mission so people can really identify what it feels like to lose eyesight and hearing. And the best way is through arts.” These 30 portraits are just part of a larger exhibit that will be on display.
“We’re hoping that we start here with grassroots and then some people who have Usher Syndrome are here and they’ll bring it to their towns and we’ll bring it all around the world,” Nancy added.
The ultimate goal? “We want to identify more people with Usher Syndrome so they can register and they can do clinical trials until they find a cure,” Jan explained. The Winter Solstice USH Awareness Walk was certainly an exceptional first step.