Del Mar residents Jill and Evan Stone to be honored for longtime support of Foundation Fighting Blindness
By Karen Billing
Longtime Del Mar residents Jill and Evan Stone will be recognized for their visionary support of the Foundation Fighting Blindness organization at the May 22 Dining in the Dark event to be held at the Hyatt Regency La Jolla.
Over the last decade, the Stones have raised over $1 million with their fundraising events for Foundation Fighting Blindness, motivated as parents to two children with Usher syndrome, which not only results in profound deafness but causes progressive vision loss.
Both of the Stones’ children, 38-year-old Liz and 31-year-old Adam, were born deaf. They did not discover that their children had Usher syndrome until Liz was a freshman in college and started to experience the symptoms of retinis pigmentosa, the loss of peripheral vision.
She was then a student at the Rochester Institute of Technology in New York and attended school with a population of 1,200 deaf students. Her classmates were able to recognize that she was not responding to their waves and gestures.
After visiting a specialist, the Stones were told that their children will most likely become blind and that there is no cure.
Evan said the words “devastating,” “dismay” and “depression” come to mind when he thinks of what he was feeling as a father that day.
“It was just a shock,” Jill said. “Here we’d spent all these years, time, money, education and therapy to get our children to feel good about themselves and make their way in the world and then boom, the other shoe dropped.”
“If your child is deaf and blind, your child is cut off from the world almost entirely,” Evan said.
Now national trustees for Foundation Fighting Blindness, the Stones held their first fundraiser in 2003 and this year’s Dining in the Dark will be their 11th event. They started with charity wine tastings and auctions, but the Dining in the Dark concept began in 2008.
At the event, guests are challenged to eat their main entrée in total blackness. Visually impaired servers present the food to the guests using a system of ropes and stanchions. The servers share their experiences to help diners navigate their meal under extremely unique circumstances that for the visually-impaired servers is their daily life.
“Reactions to Dining in the Dark are truly powerful, I think, because people don’t often realize the daily obstacles of living with low to no vision,” said Jill Stone. “As cutting-edge gene therapy and stem cell research progresses in clinical trials that are already restoring some vision in patients, we’re so hopeful that treatment and cures are in sight.”
The Stones’ son Adam has participated in past Dining in the Dark events, attending with his deaf friends, and it is a very different experience for them.
“When the lights were on, he and his friends were communicating ferociously,” said Cheyanne Sauter, Foundation Fighting Blindness assistant director of events, western region. “But when the lights go off, he loses all form of communication.”
While other attendees can talk with each other to pass the butter or ask their neighbor what they think it was they just took a bite of, Adam and his friends were only able to use tactical signing to communicate via touch.
“We’re in the dark for 20 to 30 minutes but for some people, they live with this their whole lives,” Jill said. “Our idea is not to have that happen.”
The event will be held at the Hyatt Regency La Jolla and the night’s keynote speaker will be Dr. William R. Brody, the president of the Salk Institute for Biological Studies.
Proceeds from the event will benefit the Foundation Fighting Blindness’ sight-saving research efforts toward preventions, treatments and cures for retinal diseases such as retinis pigmentosa, macular degeneration and Usher syndrome.
Jill and Evan didn’t discover that their daughter Liz was deaf until she was about nine months old. Six years later, their son Adam was born deaf as well, proved by testing done when he was 30 days old.
“It wasn’t a good day for us,” said Evan of the day they found that their second child was also deaf. “The only consolation was that we’d gone through so much hard work and found success with Liz and who better to deal with a deaf child than us? We weren’t rookies, we were veterans and at least we knew what to do.”
They knew about the right therapy and treatment to help their children learn to speak, they knew all about hearing aids and how to get their children the necessary socialization.
They worked with teachers to explain what their children’s needs were as students.
“There’s early intervention and laws now to protect kids with special needs but we were sort of paving the roads with this in many cases,” Jill said.
Liz spent two years at the Central Institute for the Deaf in St. Louis and Adam was there for six and a half years, until the fifth grade.
“That was very difficult for us to be apart and certainly none of us wanted that but it worked to a very great extent,” Evan said of the school’s success in teaching their children speaking and language skills.
Both children were able to come back and be mainstreamed into local schools in the Del Mar Union and San Dieguito Union School Districts and the Stones praised the districts and the teachers for “bending over backward” to meet their children’s needs.
Being deaf has not been a roadblock.
Liz has gone on to earn her master’s degree in public administration from American University and works as the major gifts officer at Gallaudet University in Washington D.C. She is a mom to the Stone’s 4-month-old grandchild.
Adam is currently working on his Ph.D. in education at Gallaudet, after earning his master’s degree in bilingual teaching and learning at UC San Diego.
After the Stone children’s diagnosis of Usher syndrome, the Stones became determined to learn everything they possible could, leading them to the Foundation Fighting Blindness. They became deeply involved with the organization through their many years of fundraising efforts.
Both understand the bottom line is raising money for research, especially for an “orphan disease” like Usher syndrome. Orphan diseases are rare diseases that impact a small percentage of the population — fewer than 200,000 people in the country have Usher syndrome, which makes it even more important to generate support and mobilize researchers to tackle it, Evan said.
“The government is cutting back on funding research so it’s up to our communities now to fill in the gaps,” Jill said.
They have been thrilled to see the advancements that have been made over the 10 years that they have been involved in their fundraising efforts. When they first started, Jill said that scientists didn’t even know one gene that causes retinis pigmentosa —now they know of over 100.
Ten years ago there were no clinical trials in progress, now there are 15. Last month, the FDA approved Argos II, known as the “bionic retina” which is able to restore some vision to people who are blind from advanced retinis pigmentosa.
The Stones were also encouraged by a case in which sight was able to be restored for a child with a rare eye disease of Leber’s congenital amaurosis.
“That’s not just a good job, that’s what’s known as a miracle,” said Evan, who is senior vice president of Legal Services and General Counsel at Pacific Medical Buildings, LLC. “And it was done in large part due to the Foundation Fighting Blindness’s efforts.”
The Stones will keep up the fight for sight for the sake of everyone fighting blindness.
For tickets to Dining in the Dark, visit www.blindness.org and click on News & Events or email Cheyanne Sauter at CSauter@FightBlindness.org or call (310) 207-2089.
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