Insights and Impact

A Clear Vision

Jane Gomez sees a future free of degenerative retinal disease


Photo­graphy by
Amanda Stevenson Lupke

Jane Gomez in various levels of focus

Jane Gomez doesn't know whether the man sitting three feet from her at her dining room table is smiling. She's not sure what color shirt he's wearing, and she can't tell that he's sporting a short, neatly-trimmed beard, or that his hair is buzzed close to his head. She sees only a faint outline of his eyes, nose, and mouth.

The man—me—sees something wholly different. He sees a petite 52-year-old woman with shoulder-length brown hair and dark eyes that frequently dart from side to side, but never focus. He sees a woman who observes her world through an ever-narrowing, darkening field of vision, yet never allows that to slow her down. He sees an accomplished attorney, a proud mother, a loving wife, and a tireless advocate for those who, like her, suffer from retinitis pigmentosa (RP), a group of inherited diseases that cause retinal degeneration.

Gomez, WCL/JD '89, sees the world as a blurry kind of beautiful.

"People say that 90 percent of the information that comes into your brain is through your eyes, so when you lose that you really have to find ways to compensate," says Gomez. "RP is not life threatening, but it's certainly life altering."

As she makes her way around her beautiful Short Hills, New Jersey home, sunlight pouring in from its many skylights, windows, and sliding glass doors, Gomez walks not tentatively, but rather, measuredly. She's memorized the floor plan and the layout of the furniture, but she still extends her arm, feeling for familiar landmarks before taking each step. Gomez's vision is now 20/1000, so she's learned to rely on her other senses.

"She's an incredible listener, and she has remarkable retention," says her husband of 30 years, Ramon. "She remembers names, numbers, addresses. She devotes more brain cells to adapting and performing than I devote to everything I do."

I ask Gomez if she'd be able to recognize me by sight if we were to meet again.

"Oh no," she says quickly. "But I could do it from your voice."

Growing up in suburban New Jersey, Gomez always had poor vision, but she wasn't diagnosed with RP until she was 16.The doctors' message was chilling.

"They told me that I had this disease and I would go blind," she recalls. "They didn't really know when, but my parents freaked out, started doing research, and found the Foundation Fighting Blindness. Just being hooked into that community was really lifesaving."

Although her eyesight was continually fading, Gomez says she was in "serious" denial about her condition until her mid-30s. Family and friends knew, but she'd tell potential employers only that she "didn't see well.

On at least one occasion, her poor sight proved fortuitous. As a freshman at Georgetown University, she was trying to track down a friend when, struggling to see the dorm room numbers, she knocked on the wrong door. Ramon, her future husband, answered.

At Washington College of Law, her aptitude for memorization made her the envy of many of her classmates.

"There was nothing you could say to her or that she read that she didn't remember," says Lisa Fried Greenberg, WCL/JD '89. When I'd asked Gomez for the cell number of her longtime friend, she rattled it off without hesitating. Who knows phone numbers these days?

"She always got what the professors were saying, and she knew how to argue. I think she had a photographic memory."

After earning her law degree, Gomez went to work at the Justice Department's Executive Office for Immigration Review, adjudicating cases at the Board of Immigration Appeals. Gomez has always felt a special bond with immigrants; her grandparents came to the United States from Russia and Poland.

"My belief is that this country can absorb a lot, and we benefit from immigrants' creativity and industriousness," she says. "There were also a lot of people fleeing really horrible conditions in their countries. Within the bounds of the law, I thought there were certain people that should be allowed to stay."

Following a stint at the Immigration and Naturalization Service, Gomez went back to the Justice Department, where she worked in the civil division defending the INS against lawsuits. Among her most important work was serving as an attorney on Cuban American Bar Association v. Christopher, which determined the rights of tens of thousands of Cuban rafters who fled the country for the United States and were detained at the US Naval Station at Guantanamo Bay, Cuba.

It was a high-profile case, one for which she received a handwritten thank you letter from then-attorney general Janet Reno. Gomez was determined not to let her visual impairment hinder her. During a visit to Guantanamo Bay, she discreetly clutched the arm of a lieutenant colonel, allowing him to lead her while she joked about the military's then "Don't Ask, Don't Tell" policy.

"If I got up and walked down the street I might trip on a curb, but my reading was fine," she says. "But I slowly had to come to terms with getting more assistance."

It wasn't until after the birth of her second child that Gomez's sight declined precipitously. At the time she was in private practice, but she put aside her law career to volunteer for the PTA, navigate the maze of special education services for her dyslexic daughter, Rachel, and raise money for the organization that comforted her when she was diagnosed 36 years ago.

"She's asked to do these things because she's so smart—her challenges are not relevant," Ramon says. "I think that she's always had a very keen sense of the fact that she needs to be better than anybody else. Not to prove herself, but she just refuses to be defined by her eyesight."

Earlier this year Gomez was named a national trustee of the Foundation Fighting Blindness, which she and her family have supported for years. Her father, Ed Gollob, served as director of the board of trustees for nearly 30 years, and Ramon has been a trustee since 2004. Dedicated to providing preventions, treatments, and cures for people affected by RP, the foundation was established in 1971 and has raised more than $650 million toward research.

"We select national trustees based on demonstrated leadership and support for the organization," says William Schmidt, the foundation's CEO. "It's a special designation for the people who have shown on a continued basis that they're going above and beyond the call of duty to help support us. Jane and her entire family are a tremendous example of that. We would not be accomplishing what we're accomplishing without the kind of passion and commitment and financial support and leadership that her family has provided."

Progress has been encouraging. Fifteen years ago there were no human clinical trials focusing on retinal degeneration. Today, there are 20, Schmidt says.

"I think it's very possible within the next year to year and a half that we could have the first gene therapy in our field approved by the FDA," he says. "It could possibly be the first gene therapy of any kind approved in the United States. That would be a very big day for our community."

And for Gomez. These days she struggles to read, relying on text-to-voice software on her computer and i-devices. An assistant helps her shop for anything she can't buy online. She doesn't drive, which makes Uber, she says, a godsend.

Still, she remains an optimist at heart.

"In my head I'm thinking there's going to be a cure, maybe when I'm 60, or 70," she says. "The science is going to get us to where we're either going to get vision back or we're going to slow deterioration. That's why I've decided to take a greater role in the foundation."

To Jane Gomez, the future looks bright.