At first glance, 15-year-old Santa Barbara High School freshman Lily Wash looks like most other teenagers her age. She plays soccer, loves listening to music, is attached to her cell phone and can’t wait to start driving. Yet Lily suffers from retinitis pigmentosa, a genetic and progressive disease that affects her peripheral and central vision, making the prospect of driving uncertain.
She hopes to raise awareness for this disease and many other blinding disorders at the fourth annual Santa Barbara VisionWalk taking place at 9 a.m. this Saturday, April 26, at Chase Palm Park. The 5K walk is free and open to the community.
“What’s so exciting about this year’s walk is that the money raised will stay in the Santa Barbara community,” said KC Wash, who is co-chairing the VisionWalk with his wife, Rhonda, and their daughter, Lily, for the third consecutive year.
For the first time in the walk’s history, money raised will impact research currently being conducted at the lab of UCSB biochemist Dr. Dennis Clegg.
Dr. Clegg’s current emphasis is in stem cell research, with a focus on developing therapies for ocular disease. Clegg and his team are in the process of developing a two-layered patch of cells to replace retinal tissue lost from conditions like RP and macular degeneration, making hopeful progress toward saving and restoring sight. Clegg’s research focuses on using stem cells to rescue and potentially replace photoreceptors that are damaged by diseases such as retinitis pigmentosa.
Additional research conducted in conjunction with the California Institute for Regenerative Medicine and the University of Southern California is investigating methods of replacing layers of support cells called RPE (retinal pigment epithelial), which would benefit patients suffering from macular degeneration.
“The VisionWalks are important sources of funding for the Foundation Fighting Blindness which supports our research, allowing us to advance therapy from the lab to the clinic,” Dr. Clegg noted.
“We are fortunate to have one of the most preeminent retina stem cell research teams right here at University of California, Santa Barbara,” said Melvin Rabena, director of the California Retina Research Foundation.
His foundation also supports the Foundation Fighting Blindness and brings many of the research findings to the clinical trial stage.
Lily is not the only local teen at risk of losing her sight. Twelve-year-old Meghan Downing, who suffers from Stargardt’s disease, hopes to raise $5,000 through her team, “Meghan’s Posse.”
“Meghan’s disease is similar to a juvenile form of macular degeneration,” said her mom, Pearl Francis, who serves as the Vision Walk media chair. “Stargardt’s affects central vision loss, leaving the peripheral intact,” explains Francis, who says that Meghan takes it all in stride and doesn’t allow the disease to hold her back.
A natural-born fighter, Meghan is working toward her brown belt in karate and she’s also an accomplished violinist, who has learned to play the instrument by ear, since reading sheet music is not an option.
But Meghan is perhaps best known in Santa Barbara for her swimming skills. She’s an honorary member of the UCSB Gauchos swim and dive team, adopted two years ago after swim coach Greg Wilson read about Meghan in the newspaper. Her Santa Barbara swim club shares the UCSB pool, but Wilson commented that he’d never realized Meghan had a disease. Meghan glows when she talks about the support of the team, “They are so great; they have done so much for me. The girls call me and take me shopping, attend swim meets and even violin recitals.”
Meghan’s greatest challenge and wish is to be able to read. She listens to books on tape and counts Harry Potter and The Hunger Games among her favorites.
“I will be very happy when a cure comes out so that I can read. I’d love to act and want to be able to read the scripts,” Meghan said.
The VisionWalk brings the Santa Barbara community together and one step closer to finding a cure. The VisionWalk is a family-friendly event and will include children’s activities, a bounce house, refreshments, live music and more. Dogs and strollers are welcome on the 3.1-mile walk course. Event leaders include family chairs, the Wash Family; medical chair, Joe Vega of ABOC of Eye and Vision Care of Santa Barbara; and media chair, Pearl Francis.
Help “Looking out for Lily” and “Meghan’s Posse,” form your own team, or simply come walk along to raise money and awareness for the Foundation Fighting Blindness. Click here for more information. Registration opens at 9 a.m., and the walk begins at 10 a.m. Saturday at Chase Palm Park, 323 E. Cabrillo Blvd.
There will also be a golf tournament to benefit the FFB at 8 a.m. Saturday, May 17 at Glen Annie Golf Club; register by clicking here or contact Vega at 805.692.6977.
— Ann Pieramici represents the Santa Barbara VisionWalk.