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Vision for the Future

by Anh-Minh Le

Lorie Hirson jumps in for her sixth Alcatraz Swim for Sight. Last year, there were 42 swimmers. Lorie and her husband, Ron, cross the finish line together, raising funds and awareness to eliminate blindness worldwide. | Photo courtesy of Trish Tunney.

With a popular swim as a draw, a couple set out to raise awareness and $1 million for UCSF ophthalmology programs.

The swim from Alcatraz Island to the shores of the City presents numerous challenges — namely its chilly temperature (typically in the 50s year-round), unpredictable currents and potentially choppy waters. Then there are the San Francisco Bay’s inhabitants, such as sharks and sea lions. For Lorie Hirson, there was another factor that made this bucket-list activity even more significant: She is legally blind.

That didn’t deter her from completing the swim not once, but six times for charity. Over the span of a decade, her 1.5-mile treks from the former penitentiary to Aquatic Park generated $1 million for All May See Foundation (previously known as That Man May See), which provides fundraising support to the UCSF Department of Ophthalmology and Francis I. Proctor Foundation for Research in Ophthalmology.

It all started in 2011, when Lorie’s husband, Ron, planned the inaugural Alcatraz Swim for Sight to celebrate her 40th birthday. “I think Eat Pray Love was a popular book at the time,” he says, “so I gave her eat, climb, swim: a couple of cooking lessons; some climbing time at Planet Granite; and then for the swim, because I knew it was something she wanted to do, I arranged to bring some people together and raise a little bit of money.”

Thirteen swimmers took part back then. Last year, with the number limited because of the pandemic, there were 42 — among them, the Hirsons’ 15-year-old son and half a dozen of his water polo teammates. With Lorie and Ron reaching their seven-figure fundraising goal for the event, which was held six times in a 10-year stretch, it was most likely the final Alcatraz Swim for Sight. (It was also the coldest, he notes.)

Photo courtesy of Vivek Khanzode.

Over the years, participants have ranged in age from 8 to 85, with individuals who are legally or completely blind, as well as blind and deaf. In 2016, there were more than 100 swimmers, including three-time Paralympian Brad Snyder, a U.S. Navy veteran who lost his vision while serving in Afghanistan and won eight medals at the Games in London, Rio and Tokyo (six gold, two silver).

When Lorie and Ron met in 2001, he had recently done his first swim from Alcatraz; she was present when he finished his second. “I saw him come out of the water — the excitement, the thrill, all the family and friends supporting and cheering on everybody,” Lorie recalls. “I was like, ‘I’m a good swimmer. I can do this. How hard can it be?’ When Ron organized the swim for my birthday, I thought I might as well turn this into a platform to raise money and awareness to help eliminate blindness and identify treatments and cures.”

Growing up in New Jersey, Lorie was a competitive swimmer. At age 18, the summer between graduating high school and entering the University of Wisconsin–Madison, she was diagnosed with retinitis pigmentosa, or RP, for which there is currently no known cure. The rare and inherited eye disease — the National Institutes of Health estimates it affects one in every 4,000 people in the U.S.; Lorie’s older brother has it, while her other brother does not — causes decreased night and peripheral vision. Over time, the degeneration of the retina can lead to complete blindness. (Former San Francisco Mayor Willie Brown and Gordon Gund, one-time co-owner of the San Jose Sharks, are among those with RP.)

To navigate the maiden Alcatraz Swim for Sight, “because I’m stubborn and independent,” Lorie recounts with a laugh, “I would ping-pong between Ron and a kayak. They were my compass, getting me to where I needed to be. This last swim, I had to tether to Ron. I had to know my limitations and not get swept out to the bridge.” Clocking in at 47 minutes, “we had our best swim ever,” says Ron. “It was a lot of fun.”

“Once you sink into it and relax, and you stop and take a look, you realize — you feel super small in this vast open water,” Lorie reflects. “There’s nothing like it. It’s liberating. You feel super strong and confident and you’re like, ‘I got this.’”

“This type of support is instrumental for exploring new research avenues that will lead to tomorrow’s breakthroughs.” — Deborah Chesky

Lorie — who still dabbles in public relations but describes herself these days as the “chief family officer” (she and Ron have two sons) — has received care at UCSF for the past two decades, which is how she learned about All May See. Its stated mission is “curing and preventing blindness, serious eye diseases and visual impairment so that everyone in the world can see.” The public charity relies on private philanthropy and grants, with 95 percent of donations allocated for clinical care, education and research.

Ron, an adviser to Internet companies, likens All May See to angel investors, explaining that agencies such as the NIH do not offer grants to test out hypotheses; rather, researchers first need to show proof of concept. For the recipients of All May See’s funding, all of whom are UCSF faculty members, “sometimes this is the first grant they’ve ever applied for,” says the nonprofit’s president, Deborah Chesky. “Once they get some initial funding, get their data sets, get their labs set up, many of them go on to get other grants, like from the Bill & Melinda Gates Foundation or National Eye Institute, which is part of the NIH.”

All May See’s fundraising goal for the current fiscal year is $6.5 million — a number it exceeded the previous year. To date, the biggest project it has contributed to is the UCSF Wayne and Gladys Valley Center for Vision, a $189 million state-of-the-art facility that opened in November 2020 on the Mission Bay campus.

Last fall, shortly after October’s Alcatraz Swim for Sight, the money raised from the event was distributed: $400,000 went toward a $150,000 Chairman’s Award and seven peerreviewed research projects. “The funded programs span from basic neurobiology to advanced imaging, to use of large sets of clinical data,” says Chesky. “This type of support is instrumental for exploring new research avenues that will lead to tomorrow’s breakthroughs.”

While some gifts to All May See are earmarked, the Hirsons’ fundraising is unrestricted. “It’s broad on purpose,” says Ron, to back “everything from river blindness in Africa to glaucoma to even the connection between how you might identify Parkinson’s early by looking at the myelin, the wrapping around the nerves in the eye. There’s lots of interesting work being done with ophthalmology and its neighboring disciplines.” (The new WGVCV not only brings UCSF’s vision care and research under one roof but, with its proximity to other medical departments, promotes interdisciplinary efforts; Parkinson’s, for example, is a neurological disorder.)

According to All May See, 93 million adults in the U.S. are at high risk for serious vision loss and an estimated 2.2 billion people have a vision impairment, nearly half of which could have been prevented. This very article illustrates how pervasive the issue can be: There’s Lorie and her family. Chesky’s husband has Fuchs’ dystrophy, an inherited disease, and underwent a cornea transplant. And several years ago, I experienced a partial loss of eyesight myself.

In 2021, All May See marked its 50th anniversary. Since its establishment by Drs. Michael Hogan and Samuel Kimura, both ophthalmologists, it has helped fund myriad eye advances — from Dr. Steven Shearing’s creation of the Shearing lens in the 1970s that innovated cataract surgery to, just last year, Drs. Jacque Duncan and Deepak Lamba’s groundbreaking research on retinal stem cells and gene therapy. Because of the pandemic, events to celebrate the foundation’s half-century milestone are on hold. In the meantime, Chesky and her team are highlighting monthly initiatives such as Sports Eye Safety Month (April) and Healthy Vision Month (May).

As for Alcatraz Swim for Sight, “we’re hitting an indefinite pause,” says Lorie. “We like to joke that maybe our sons will be passionate enough to take it over one day.” Ron adds that “there’s a lot of work around fundraising and community awareness that aren’t just the swim. That was our way of getting a different generation aware of visual impairments — living with eyesight challenges as well as the amazing triumph of spirit of folks who are visually impaired — and the good works of UCSF ophthalmology and All May See.” (The group’s board chair, John de Benedetti, who is blind, was out of town during last fall’s event. He is planning his own swim from Alcatraz, and has raised over $15,000.)

The Hirsons’ website, alcatrazswimforsight.org, still accepts donations. And the couple, members of the All May See board, are considering other ways to continue fundraising and outreach. “Maybe in six, nine, 12 months, we have an event where we bring in doctors who can demonstrate the science,” Lorie elaborates. “They can talk about how they’re using the money raised and how that money has made a difference — because it definitely has.”

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