LA Daily News: CHARITY: Woman who suffers disorder starts institution with $300.

HELPING HANDS
Vision to raise awareness

CHARITY: Woman who suffers disorder starts institution with $300.
By Cindy Von Quednow, Staff Writer
Posted: 08/30/2010 10:16:48 PM PDT
PHOTO
Helen Harris, 73, is the founder of Retinitis Pigmentosa International, a charity that is committed to focusing attention on eye problems and to promote research, public awareness, education and human services for victims of degenerative eye diseases. (Dean Musgrove/Staff Photographer) Helen Harris' world started closing in on her when she was 8, a condition she convinced herself was normal since she could pass an eye exam and didn't need glasses.

Even as her vision worsened and she had to use a white cane to navigate the familiar streets around her home, she told herself she really wasn't blind.

Finally, years later, when two of her three sons began experiencing the same symptoms of vision loss, she came to grips with the truth.

She and her boys have retinitis pigmentosa, a hereditary, degenerative eye disorder that includes loss of night and peripheral vision and can lead to total blindness by middle age.

"The doctors told us there would never be a cure, and there was no point to go looking for one because it was never going to happen," recalled Harris, who is 73 and lives in Woodland Hills.

The doctors' grim declaration spurred Harris to found Retinitis Pigmentosa International, a nonprofit organization dedicated to raising awareness of RP and other degenerative eye diseases and funding medical research for a cure.

Started with just $300 in seed money, RP International has raised millions of dollars to benefit those suffering from degenerative eye diseases. According to the National Institutes of Health, RP affects 1 in 4,000 people in the U.S.

The group also hosts the Vision Awards, now in its 40th year, to honor achievements in technology and vision. This year's event on Sept.23 will honor Apple CEO Steve Jobs, U.S. Olympic bobsledder Steven Holcomb and Dr. Brian Boxer Wachler, the ophthalmologist who restored Holcomb's vision from near-blindness.

The show will be broadcast Oct.29 on ION Television and local networks, including KCOP (Channel 13).

Harris' goal is to raise public awareness of RP, including early diagnosis and treatment. She has testified before Congress and met with President George H.W. Bush, who later narrated a movie for TheatreVision, a program that fully describes films for the visually impaired.

"Helen works practically around the clock. She is probably the most driven person I have ever met," said Christopher Dill, Harris' executive assistant. "She expects everyone else around her to be equally driven and I try to the best of my ability to keep up with that."

Harris and Dill run the organization in Harris' home. They operate a hotline for people across the country dealing with sight loss and also run a school for the blind in Van Nuys.

Among those who benefited from Harris' support was Fabiola Fragoso, who was diagnosed with RP at age 17. At the time, Fragoso lived in Van Nuys and Harris helped her cope with the diagnosis.

"Helen was very influential in my life as far as helping me acquire a better attitude about sight loss," said Fragoso, now 48 and living in Roy, Utah. "The part I really respect about Helen is that she is not only looking to find a cure, but she's also very interested in the human aspect of the disease."

Legally blind, Harris details her struggles with RP on her organization's website in the hope it will help and inspire others facing similar challenges.

"One of the honorees at a Vision Awards said, 'Helen put a face on blindness,"' Harris said. "I did that on purpose, I had to put somebody out there. Anything can be done, if you keep looking hard enough."

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