Sunday, March 18 , 2018, 4:03 pm | Fair 59º


Foundation Fighting Blindness Hosts Eye-Opening Dining in the Dark Visionary Awards

Honorees and officials see hope for a brighter future in the ongoing research of retinal degenerative diseases

[Click here for a Noozhawk photo gallery from the awards dinner.]

A distinctive fundraiser held at Fess Parker’s DoubleTree Resort helped open up the eyes of more than 200 guests, creating awareness to the immense gaps of understanding between the sighted and blind during the inaugural Dining in the Dark Visionary Awards Dinner benefiting the Foundation Fighting Blindness.

“Reactions to Dining in the Dark are truly powerful, I think, because people generally realize the challenges of living daily with low or no vision,” said Visionary Award honoree Dr. David Winter, who suddenly lost almost all of his vision 15 years ago when his optic nerves failed to function. “I’m thrilled to support research that offers hope to more than 10 million Americans dealing with retinal diseases.”

The Foundation Fighting Blindness is a national nonprofit dedicated to research, treatment and cure for retinitis pigmentosa, Usher syndrome, Macular degeneration and other retinal degenerative diseases.

Since 1971, the foundation has raised more than $500 million toward retinal research and has more than 50 chapters across the country to provide support and resources to affected individuals and families.

The eye-opening evening kicked off inside the Santa Ynez Grand Ballroom with a wine reception followed by welcome remarks from emcee and honorary chair Gerd Jordano, honorary committee member Bob Bason and honorary event chair Peter MacDougall, and remarks from Chief Development Officer Jim Minow.

During his speech, Minow explained that more than 10 million Americans of every age and race suffer vision loss from blinding diseases and that the foundation funds leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.

“However, contrary to what some may believe, people suffering from vision impairment or full blindness can do many things for themselves,” Minow said. “In fact, for many blind people, the most challenging part is not the blindness itself, but the misconceptions they face in society.”

According to the World Health Organization, it is estimated that worldwide there are 285 million visually impaired individuals and 45 million blind individuals, but the ongoing research provides hope for a brighter future.

“Today we can and have restored vision by creating a good copy of a bad gene that causes blindness at birth. We can deliver that gene to the eye, and we can let it do its work,” Minow said. “Forty people with this gene defect had their site restored, and today we are funding three additional human clinical trials in three other genes, and we believe we will see the same if not better results.

“So today after diagnosis, you no longer have to go home and get ready for the dark. Today you go home with hope.”

Mary Romo, who was diagnosed with Stargardt disease and has been legally blind for nearly 50 years, accepted the Visionary Award along with Winter and shared a story of hope for youth, such as Meghan Downing, who face the challenges of sight loss today with a more promising prognosis.

“A cure is not here yet, but we see it coming,” Romo said. “I may or may not be able to drive that little sports car or recognize you when I see you downtown, but I believe Meghan will be treated successfully while she’s still young.”

Downing goes to Santa Barbara Montessori School, and some of her hobbies are spelling and playing the violin. When Noozhawk asked how her life has changed since she started to lose sight, she shared the challenges of explaining the situation to newcomers.

“A lot of people ask me what I’m looking at because I look off to the side, and then I have to explain the whole thing,” Downing said. “The center of my vision is going away and the peripheral is pretty good, so I’m losing the center of my vision.”

Sally Hamilton presented the award to Romo, and was followed by Dr. Ed Birch presenting to Dr. Winter.

A 10-minute break was followed by the incomparable moment of diners experiencing a blacked-out room as servers followed carefully configured ropes positioned throughout the room leading well-versed visually-impaired waiters to present plates of food courtesy of Fess Parker’s DoubleTree Resort and Catering Director Kathy Ackley.

Honorary event chairs Kathy Ireland and husband Dr. Greg Olsen offered closing remarks that spoke to the power of the room and the vision of courage.

“Dr. Winter is a man of great courage, character, conviction, ethics and true vision. He’s not limited by what we see. He sees so much more,” Ireland said. “And Greg and I are blessed to experience Dr. Winter during our most challenging times of uncertainty, storms of life. Dr. Winter is fearless. Hhe rises to every occasion with unshakable faith.”

The event on this unique evening offered not only a one-of-a-kind experience but tremendous hope for the cause and the future for visually-impaired who may be in the dark now but face a brighter future.

“What seems impossible at one time can become possible at another time,” Romo said. “When Meghan was diagnosed last year at UCLA, her doctors were able to give her and her parents a much more hopeful diagnosis, and this is because of research. And research is what the Foundation for Fighting Blindness is doing for us. So we’re very hopeful that someday we’re going to be seeing a lot better than we’re seeing tonight.”

The Foundation Fighting Blindness has some exciting events happening in California in spring 2013, including a Santa Barbara VisionWalk on April 13, beginning at the Chase Palm Park Carousel Pavilion, and Visionary Awards Dinners in San Francisco on April 25 and San Diego on May 22.

The Foundation Fighting Blindness thanks the generous sponsors of the inaugural Dining in the Dark, including:

» Innovator sponsor: Gordon and Lulie Gund

» Discovery sponsors: Ann Jackson Family Foundation, and Les and Zora Charles

» Insight sponsors: Ed and Sue Birch, the Mosher Foundation, Dr. Greg and Kathy Ireland, Cottage Health System, Dick and Maryan Schall, Peter and Gerd Jordano, and Jack and Judy Stapelmann

» Explorer sponsors: Hutton Parker Foundation, and John and Mary Romo

Noozhawk iSociety columnist Melissa Walker can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk, @NoozhawkSociety, @NoozhawkNews and @NoozhawkBiz. Become a fan of Noozhawk on Facebook.

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