Cynthia Frank has spent almost all of her career — that is, when she hasn’t been debilitated by her illness — in the nonprofit world. She has planned events for the Sierra Club Foundation and raised money for the capital campaign of the Jewish Community Center of San Francisco.
But she recently took a new position, one that will allow her to help herself and others like her: She is the new development director of the National Gaucher Foundation, which has declared September as National Gaucher Awareness Month.
Frank, of San Francisco, has Gaucher disease, the most common genetic disease affecting Ashkenazi Jews. Caused by inheriting the gene from both parents, Gaucher is a lipid-storage disorder in which cells are unable to metabolize waste. Symptoms range from bouts of excruciating bone pain to severe disabilities to death.
Frank’s father is Jewish and her mother Swedish, which is also considered a high-risk Gaucher group.
While the disease usually shows up in one out of every 60,000 births in the general population, in the Ashkenazi Jewish population, that figure jumps to one out of every 450 to 600 births.
Of the five people working for the foundation, Frank is the only one who has the disease. The organization is based in Atlanta, because that’s where its executive director lives, but Frank will continue to work out of her San Francisco home.
Frank had sort of an epiphany at age 42 that brought her to this position.
“I have this disease, and on one level, this disease defines what I do, and who I am,” she said.
“But on another level, I don’t want it to define my life. There’s a treatment, and I can live with it. It was a different world when I was diagnosed, and I look at life through a whole different perspective. It’s like what kids go through when they get out of high school, thinking, ‘what am I going to do with my life?'”
Frank attended college, but at the time of her diagnosis, when she was a teenager, there was doubt as to whether she would even see adulthood.
Luckily, a new enzyme replacement therapy was approved in 1990 to help the symptoms of Gaucher. Frank has to undergo an I.V. drip every two weeks, but it helps her immensely.
Even so, Frank has had lengthy periods of pain, so debilitating she couldn’t work at all.
But when she did work, she found that she was very good at fund-raising and event planning. She had 15 years of experience at it. “I thought, ‘How can I put that towards really making a difference, not only in my life, but to help as many people as possible?'” Frank called her former doctor, the one who founded the drug treatment she is on, and told him that she wanted to help others with this disease. He suggested she call the National Gaucher Foundation.
She called the director and they spoke for an hour and a half. A week later, Frank was hired as the development director. “I want to dedicate my life to Gaucher disease,” she said. “I’ve gone from feeling like a victim, to rebelling against it, to becoming very angry about it, and now I’ve embraced it,” she said.
Frank has her work cut out for her: She is now working on an awareness campaign about the disease. The campaign will be launched this month, with actor Elliot Gould lending his help.
“The first step is raising awareness because people aren’t going to give money to a cause they’ve never heard of,” she said. “We want this to become like Tay-Sachs in the ’70s. We’ve almost wiped it out, which is what we’re trying to do with Gaucher disease.”
Frank remains optimistic that a cure can be found in her lifetime. “I have these grand objectives,” she said. “One doctor who works with the disease thinks there’s going to be a cure through gene therapy. I want to raise money for research, to find a cure.”