RANCHO SANTA FE — Backed by dedicated parents, two former synchronized ice-skaters have turned what could have been a devastating diagnosis into a VisionWalk crusade.Nicole and Alexa Finzi are identical twins, about to turn 21. Raised in Rancho Santa Fe, they’re both seniors at Concordia University Irvine. When they were little girls, they couldn’t stand Halloween. “What kid doesn’t like trick-or-treating?” Nicole says, with a laugh. “But we hated being outside when it got dark. We couldn’t see anything, not even the stars.”
There was a reason. At age 18, Nicole and Alexa were diagnosed with retinitis pigmentosa, or RP, a degenerative eye disease which, in its earliest stages, causes night blindness. “We were told we’ve probably had it from a very young age,” said Alexa. RP progresses at a different rate for everyone; the girls have been told theirs is very slow-progressing.
But Nicole and Alexa are different in some ways. Although both have been competitive ice skaters from age 5 and were on the same synchronized ice-skating team in middle and high school, Nicole quit after graduation while Alexa joined California Gold, a team which competes internationally for Team USA. Alexa skated her last competition in March because “she no longer felt comfortable driving to practices at 4 a.m., in the dark, and then being thrust into the harsh bright lights of the ice rink,” her mom, Karen Luna, said.
Plus, Nicole is majoring in elementary education, Alexa in psychology. The former is right-handed, the latter left-handed. “We’re mirror twins,” Nicole explains, meaning they have asymmetric physical traits.
They are, however, united in their awareness and fundraising efforts for FFB. Just a few months after they were diagnosed, in the fall of 2011, their San Diego VisionWalk team, Double Vision, raised $40,000 in a 6-week period— an astounding sum for any team, let alone a first-timer. Last year, when the twins were walk co-chairs, their team raised $66,000. They’re co-chairing again this year, and Karen is serving as media chair.
There’s a reason for their success, too. Reasons, actually. First, Nicole and Alexa are two exuberant, optimistic and seemingly tireless spokespeople. “We’ve talked to people who’ve recently been diagnosed, like us, and others who were diagnosed, like, 15 years ago and have lost a lot of vision but haven’t done VisionWalk,” Alexa said. “We’re trying to get all of them involved so they can make a difference too.”
They’re also backed by their divorced parents — each an invaluable resource. Karen, who runs a real estate investment firm and has a background in marketing, admits to being an emotional wreck that first year, when the e-mails she sent to a nationwide network of friends and family “shared my heartbreak and my desperation” while asking for VisionWalk contributions. The twins’ father, Bob Finzi, “is very much a statistics kind of guy,” said Nicole. “He didn’t get emotional, at least in front of us. He said, ‘What we have to do is fundraise.’” And that’s exactly what the Bay Area venture capitalist did, with impressive results.
Last year, Karen says, she and Bob hit up the same crowd, but did so in a more practical fashion, with Karen’s emails, in particular, explaining exactly what RP is and touting the Foundation’s research successes. She also added to her email list some business associates. One attorney, she said, gave $500, while an insurance agent contributed $200. “People want to help cure blindness”, Karen said. “You just need to give them the opportunity.”
This year, the e-mail campaign will continue, probably with mentions of other retinal diseases, including age-related macular degeneration, the leading cause of blindness in people 55 and older. “We’re going to tell people that, by 2020, one in 15 people will be affected by a retinal disease,” Karen said, “so that it brings the issue closer to home. Hopefully they will want to join our fight.”
Efforts will also be made, through connections the twins have, to gain radio exposure, and Karen is hoping to build on the corporate sponsorships she pulled in last year. “Businesses like their logos to be seen by lots of people,” she said. “So if we’re going to get more sponsors, we need to draw more people to the walk itself—not just hundreds, but thousands.”
Tapping into San Diegans’ love of outdoor activities should help. “We’re going to call it a walk/run this year,” Karen says. “People here love to run. A live band, free food, exercise and a great cause—“that’s a recipe for success,” she said.
As for Alexa and Nicole, VisionWalk the third time around is more of a communal, than a personal, effort. Having met and spoken with others affected by retinal diseases, “it’s not so much about my needing a cure for myself,” Alexa said. “It’s more for the greater good of our entire vision community.”
Nicole, who, like her sister, admits to having ups and downs, concurs. “VisionWalk is the best thing to happen to me. If I didn’t have it,” she said, “I’d have a hard time accepting vision loss. Feeling like you belong and can make a difference gives me a purpose. I’m going to school to be a teacher, but my work with the Foundation can truly impact a greater number of people for years to come.”
Originally printed in the Foundation Fighting Blindness’ Fall 2013 issue of “In Focus”