The Foundation Meant the World to Him

Dan Freedman
“We will always remember him with great respect and fondness as a partner when the going was the toughest,” the Foundation’s chairman, Gordon Gund, says of co-founder Danny Freedman, pictured here in 1990.

March 4, 2013 – For the longest time, Daniel Freedman was 39 years old. “That’s what he’d tell everybody, no matter how old he got,” recalls Beverly Berman, an old friend and fellow co-founder of the Foundation Fighting Blindness. “What a sense of humor he had.” Danny, as he was known to friends and family, also played a key role in getting the Foundation off the ground in 1971, and then served as its vice president through the 1990s. But on Dec. 24, 2012, he passed away — at 81, not 39 — of complications from pneumonia.

Recently, Beverly and Danny’s widow, Eileen Freedman, paid a visit to the Foundation’s headquarters in Columbia, Maryland, where they shared memories of Danny, both professional and personal. First and foremost, he was a funny, bright and beloved family man who “adored” his two daughters and five grandkids, according to Eileen.

But he was also “a self-made man,” Beverly pointed out, an accomplished real estate broker who ran his own business in his native Baltimore, despite being legally blind most of his career. Danny was diagnosed, at age 11, with retinitis pigmentosa (RP), a hereditary disease that causes progressive vision loss. Although his mother and three older brothers also had RP, it wasn’t until 1971, when he was 40, that Danny came across another family affected by the disease.

“My brother-in-law had a hardware store, and Danny went there looking for supplies for his rental properties,” Beverly recalls. “He must have had a hard time seeing things, because my brother-in-law asked, ‘Do you have an eye condition?’ Danny says, ‘Why do you ask that?’ and he says, ‘My two nieces have something called RP.’ And Danny says, ‘That’s what I have.’”

The nieces were Joanne and Mindy Berman, the daughters of Beverly and her husband, Ben, who’d been diagnosed with RP a few months earlier, in January of 1971. The Freedmans soon got together with the Bermans, who were making plans to start a foundation. But they needed support, from friends, funders and, eventually, researchers – no easy task when virtually nothing was known about retinal diseases and few scientists were studying them.

Danny helped kick things into gear by tracking down the address of another Baltimore resident with RP. Turns out that his driver, however, parked in front of the wrong house. When the woman who answered the door found a man wearing sunglasses at night and struggling to see, she was intrigued. Within half an hour, Harriet Finkelstein suggested that Danny meet her husband, David, who happened to know John Kluge, the chairman of Metromedia, which had radio and TV stations across the country.

Interviews on radio and TV and with the Associated Press followed, and donations began to pour in. In September of 1971, FFB’s precursor, the Retinitis Pigmentosa Foundation, was incorporated, and its board included the Finkelsteins as well as other friends and associates, including Gordon and Lulie Gund, whom the Bermans had met through Dr. Eliot Berson, a Harvard researcher who was one of the few retinal specialists at the time.

“Danny was truly an inspiration for me,” recalls Gordon, who also has RP, was a co-founder as well and is chairman of the Foundation. “He was an example of how someone who’s losing his or her sight can still thrive, personally and professionally. And he was always optimistic about finding a cure. Lulie and I always admired and loved Danny’s thoughtful, dedicated persuasiveness and his terrific humor. We will always remember him with great respect and fondness as a partner when the going was the toughest, as an exceptional family man and businessman, and as a good friend.”

The Foundation’s first few years, in particular, were challenging, as “most of the scientific doors were closed to us,” Beverly recalls. “No one knew anything about the retina.” So the Foundation’s aim, early on, was to establish a lab where that expertise could be cultivated.

“Danny was instrumental,” Beverly continues, “because, when we needed grants from other foundations, he and Benny would go together, to make the pitch, and Danny was the one who actually had RP. He’d share what that was like and the frustration over the lack of research and being one of four brothers with it.”

He would also reveal that he and Eileen had chosen to adopt instead of have their own children, as they were fearful biological offspring might also have RP. “That was a really a hard decision,” says Eileen, who was married to Danny for 58 years.

By 1974, the Foundation had raised the more than $600,000 it needed to open the first lab dedicated to the study of retinal degenerative diseases – the Berman-Gund Laboratory at Harvard Medical School, with Eliot Berson serving as director, a post he still holds today. “We’re indebted to Danny for helping us get things started,” Gordon says, “and, thereafter, helping to build the Foundation to where it is today – a worldwide effort that’s raised more than $500 million.”

Eileen says that, in his later years, after Danny had sold his business and earned the Foundation’s Builder of Sight Award, and was serving as a National Trustee Emeritus, he took great pride in the Foundation’s achievements. “He talked about it all the time – the fact that it funded so many researchers who became retinal specialists and helped get so many clinical trials for treatments underway,” she says. “He was proud to be there in the very beginning. The Foundation meant the world to him.”