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Usher syndrome has never deterred the Stone family. Of course, it wasn’t easy when Evan and Jill Stone’s two children, Adam and Liz, were born profoundly deaf. And the news later on that their kids were experiencing vision loss from retinitis pigmentosa made things even tougher. But Usher syndrome never got in the way of Adam’s and Liz’s pursuit of what they wanted out of life. If anything, it made them bolder and desire even more.
Jill comments, “They just don’t let it get in the way of the things they want to do. As they were growing up, I did wonder how they were going to take care of themselves. But they have more chutzpah than I ever did.”
 Adam recently spent a year in Sri Lanka teaching English and sign language at a school for the deaf and blind. He even published the first Sri Lankan sign language dictionary. He’ll soon be entering a Master’s Degree program in Deaf Education at the University of California, San Diego.
Liz earned a Master’s Degree in Public Administration from American University and worked for three years as an Assistant Director in Development at Gallaudet University, a leading undergraduate school for the deaf and hard-of-hearing. She recently joined the Vera Institute of Justice as a Senior Program Associate for the Accessing Safety Initiative. The Institute helps leaders in government and civil society improve the systems people rely on for justice and safety.
Almost 15 years ago, Jill and Evan learned about the Foundation and quickly began supporting the drive to advance research. In 2003, they launched the San Diego Blind Wine event, which has very successfully raised money for research. And now they are serving as Honorary Chairs of the inaugural San Diego Dining in the Dark. Jill and Evan are also National Trustees of the Foundation.
Interest in retinal research has become a family affair. When Adam and Liz came to San Diego earlier this year to celebrate their father’s “milestone” birthday, they also joined their parents for the Foundation’s Day of Science to learn about the latest milestones for research to cure retinal diseases.
Adam was very inspired by what he learned at Day of Science, and here’s an excerpt of what he wrote in his blog just after the event: “There are sight-saving technologies being tested on humans right now. Real treatments and cures are not far off. I know that because of these treatments, I will not go blind, and even perhaps my full sight will be restored one day. It’s exciting news and it makes me happy.” (Adam’s blog is available at: www.deafdc.com/blog/adam-stone/.) Liz was also inspired by the event and has embarked on a fundraising campaign for the Foundation’s Northern Virginia/DC Metro VisionWalk that will take place on May 17.
Many members of the Stones’ extended family are strong supporters of the Foundation Fighting Blindness, including Jill’s parents who are Platinum Sponsors of Dining in the Dark. Also, her brother and cousin in Detroit are co-captains of a team for the inaugural VisionWalk in Eastern Michigan on May 17.
Evan and Jill echo their children’s enthusiasm for the research. “Evan and I are pretty amazed how far the Foundation’s research has come,” says Jill. “We just have to keep the money coming in. A treatment or cure for our children can’t come soon enough.” |
