Vision Impairment Leads to Lifelong Effort to Help Others

At the dinner table, most girls talk to their families about their day at school,  hefty homework assignments or perhaps, even their new crushes.

But when Pikesville resident Mindy Caplan was 11, the dinner-table conversations went much deeper—they focused on blindness.

At that age, Mindy Berman—her maiden name—was diagnosed with the rare disorder retinitis pigmentosa, known as RP. Her younger sister, Joanne, was diagnosed with the same disorder at age 9.

“My parents thought I was having problems paying attention or that I was just a clumsy child,” said Caplan, now 52. “Then they took me to an optometrist at Johns Hopkins who told them I had a rare eye disorder and to take me home and teach me Braille, that nothing could really be done.”

So, in 1971, the girls' parents Ben and Beverly Berman found a way to help. They formed the Foundation Fighting Blindness to fund research that would save the eyesight of others.

Caplan was involved in the foundation for 27 years, including as 'the poster child,' she quips. But she stopped to raise her sons, ages 15 to 20, and to take on other work challenges. But now she's back, organizing and participating in events.

These days, the Baltimore Foundation is one of the leading, private funders of retinal research with research centers in London, Paris and Israel.

The foundation has raised $425 million in its 40 years, and has funded research breakthroughs, as well.

For example, one recent study funded by the foundation used gene therapy to restore significant vision in children and young adults who were previously blind.

Mindy, who is legally blind, said she wanted to give back to the foundation her parents formed four decades ago.

“Having seen what my parents have done and the love they gave us and the positive household we lived in, I want to be able to give back what I was given,” Caplan said.

As the foundation celebrates its 40th anniversary this year, Caplan is planning the foundation’s national conference, Visions2011, set for June 23-26 at the Baltimore Marriott Waterfront. The conference is expected to attract 500 attendees, including researchers, physicians and those with RP.

Foundation CEO William Schmidt said he and others in the organization are grateful for Caplan's work. "She’s done an enormous amount of work to promote awareness of the diseases and build the organization into what it is today. She’s a delightful person to work with," Williams said. "The organization wouldn’t exist if not for her and her family."

This month, Caplan organized and participated in the fourth annual Baltimore VisionWalk, held to raise money to promote brighter futures for people who have sight problems.

“Everyone was there for same reason—to meet others, support each other and raise money. It was fun and invigorating to walk with other people who could relate and be supportive of one another for a good cause," Caplan said.

While the foundation focuses on RP, which Caplan describes as “an inherited, retinal eye disorder that is degenerative,” it also helps fund research on Stargardt disease, macular degeneration, and Usher’s syndrome, which collectively affect more than 10 million Americans.

When Caplan was young, the RP took a quick hold, causing night blindness. Eventually she lost her peripheral vision, and now she sees about as much as person without visual impairment would see when looking through a straw, she said. She's never had enough field of vision to drive a car.

Married to David Caplan, she has three children,  Jason, 20, Jared, 16, and Mitchell, 15. None are affected by the disorder.

Despite the challenges that come with her disorder, Caplan exudes an optimistic and affable demeanor, one that is both infectious and inspiring.  

“The way I look at it, no one is built perfectly,” Caplan said. “Everyone has flaws, whether they are emotional, mental or physical, but I love life. I love people. I love being involved."

Her parents were the same way, she said. "They never stopped any of us from pursuing what we wanted to do," Caplan said. "And because of that, I never was fearful of doing anything or trying anything.”

Caplan said she gives the following advice to parents of children who have the disorder: "Love your children and be honest with them.” It's the same advice her own parents gave to her.

“ ... Love, respect and honesty can go far in a relationship. And if you start off your relationship with your kids in that regard, there is nowhere to go but up,” she said.

Caplan attended , , now Pikesville Middle School—and Pikesville High School, before receiving a journalism degree from the University of Maryland.

Editor Janet Metzner contributed to this story.