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Imagine the horror of being a talented artist, someone whose greatest joy is to pick up your brushes and express your emotions on canvas, only to have that gift slowly and insidiously extinguished by darkness . . . a blindness that begins almost imperceptibly in the early years of life, yet gradually closes in on your peripheral vision, making your world smaller and darker with each passing year, until only a tiny pinhole of light remains.
For one woman -- Helen Harris -- this is what it means to have retinitis pigmentosa (RP), a degenerative, hereditary eye disease which afflicts nearly 3.5 million people worldwide. When diagnosed with the condition nearly 33 years ago, Helen was a homemaker in Pennsylvania, expecting to carry on a fairly normal life as a corporate wife and mother. Yet, 14 years later, upon the tragic discovery that she had passed RP on to two of her young sons, Helen's life took a dramatic turn.
Founding RP International (RPI) in 1974, the homemaker-turned-activist launched a race against time -- hell-bent on finding a cure before her children totally lost their sight as well. For the past 20 years, Helen's mission of love has been a roller coaster of struggle and hope, triumph and disappointment. Through dogged determination and persistence, she has built RPI into one of Hollywood's most powerful charities, enlisting the support of over 100 of the world's most famous celebrities, including Bob Hope, Charlton Heston, Stevie Wonder, Bette Davis, George Burns, Dionne Warwick, Danny Kaye, Vin Scully and a host of others; as well as international royalty, the U.S. Congress and even former President Bush.
Indeed, Helen has overcome countless obstacles to raise more than $8 million for research and treatment for RP over two decades. Seeking out the world's most preeminent physicians, she commissioned the first medical book written exclusively about RP, Retinitis Pigmentosa, and established the first laboratory for retinal cell transplants, a promising though controversial therapy once deemed impossible by health care authorities. As the medical community -- largely thanks to her efforts -- teeters on the threshold of a treatment with the potential to restore the sight of millions, Helen is pushing harder than ever to secure the funding needed to turn this dream into a reality.
Born in Philadelphia in 1936, Helen O'Malley, the fifth of six children of Irish immigrants, began to present the first symptoms of RP -- night blindness and loss of peripheral vision -- when she was only eight years old. At the time, Helen and family thought her resultant stumbling and fumbling were simply general "clumsiness" -- even when the vivacious girl grew into a teenaged wallflower. (She couldn't see well enough to dance in the darkened auditoriums at the school proms). Still, she could read the eye charts at the doctor's office and tested as having 20/20 vision.
Married in 1958 to aspiring engineer Bob Harris, the young woman first discovered the real cause of her "clumsiness" when her elder sister was about to be operated on for a supposed brain tumor. When Helen remarked to the physicians that she, too, was experiencing symptoms similar to her sister -- constantly falling, bumping into things -- the surgery was abruptly canceled. Both sisters were then examined and informed they had Retinitis Pigmentosa. Still, they were kept in the dark -- literally and figuratively -- that they would eventually go totally blind from the genetically transmitted disease.
In 1968, with her eyesight growing worse, Helen finally admitted that she needed white cane training when she was unable to find her way home from a park one evening, even though she lived only a few blocks away.
"I couldn't see anything, I was terrified," Helen recalls. "In fact, I wrenched my foot when I stepped into a construction site. That experience was a real 'wake-up' call for me."
While learning to use the white cane, Helen sought to "prove to the world" that while she had some vision problems, she wasn't really "blind." Thus, she decided to take up painting. With only two art lessons, the young homemaker astounded family, friends and her instructor by showing tremendous innate talent. Encouraged, she plunged into painting with a vengeance. The more the darkness closed in on her, the more she painted.
"Art was tremendous therapy for me in dealing with RP," Helen notes. "It was a real boost for my self-esteem. As long as I could do something that only a sighted person could do, I didn't feel quite as handicapped. The harder it became for me to see, the more creative I would get in finding ways around it."
Yet, it was Halloween night, 1972, that changed her life forever. Now the wife of an up-and-coming executive, Helen had moved to Woodland Hills, California, with husband Bob and their three young sons. On this evening, she sent off middle son Jim, then 10, for an evening of trick or treating. When he came home crying, his knees scraped and costume torn, (he couldn't see in the dark and kept falling down), the reality of the situation hit home.
"Jim looked up at me, tears streaming down his face, and said, 'Mom, I'm just like you, '" she recalls. "I was devastated."
Upon testing, Helen learned that both Jim and her youngest, Richard, had RP. Fiercely determined that her sons would not totally lose their sight, Helen embarked on her race against time. With only $300 seed money, she founded RP International in 1974, the first non-profit organization dedicated to raising funds for research to find a cure for this tragic disease.
In 1982, Helen instituted the first annual RP International Telethon, first seen only in California, and now broadcast in 50 states and 42 countries around the world. Establishing the first "Low Vision Board", Helen skillfully assembled this group -- comprised of previously "warring" factions of optometrists and ophthalmologists -- to research and create devices to help people with poor eyesight or "low vision."
Other highlights of her dynamic quarter century of service to the cause have included the "Forgotten Eyes" recording. This star-studded "We Are The World" type song -- which features Bob Hope, George Burns, Patti LaBelle, Dionne Warwick, Smokey Robinson and many other celebrities -- was released by Motown Records and has raised more than $100,000 for RP International. It is currently being produced in a "country" format with Clint Black, Kathy Mattea, Ricky Van Shelton, T.G. Sheppard, Bobby Goldsboro, Roy Rogers, Gene Autry, Lee Greenwood and many other top stars.
Further, Helen serves as president of the Board of Directors of the School for Visually Handicapped Adults in California's San Fernando Valley, a facility which provides much needed social support and educational opportunities for the blind. She has raised funds to provide white cane training to the needy and vision aids for disadvantaged youth with RP, as well as chair lifts to victims of the disease who also suffer from multiple neurological disorders.
For three consecutive years beginning in 1990, Helen was chosen to testify about the need for funding for blindness issues before the Congressional Committee on Health and Human Services. Subsequently, she is credited with influencing the appropriation of more than 17 million dollars toward blindness tissue research via the National Eye Institute. Also in 1990, she met with President Bush in the Oval Office to discuss RP and the aforementioned retinal cell transplant therapy. Harris was present in the operating room when the first ever retinal cell transplant on a human was conducted in 1989. The successful operation has created a waiting list for this still largely experimental procedure.
In addition to a regular slate of fund raising dinners and silent auctions, Helen instituted the RP International "Vision Awards" in 1976. These honors -- given to those who have exhibited extraordinary "sight, foresight and insight" in the creative arts -- have been gaining increasing attention for attracting major Hollywood influentials such as Aaron Spelling, George Lucas' Industrial Light and Magic, Sherry Lansing, Michael Crichts, Ivan Reitman, Tom Cruise, Kenny Edmonds, Jon Voight, Alan Parker, and many others.
Though she is no longer able to paint due to her blindness, Harris' art work was recently featured in the "Very Special Arts" exhibit on L.A.'s famed Rodeo Drive. Plans call for other paintings to be featured in a similar exhibition at the John F. Kennedy Center in Washington, D.C.
Helen also hosts a National Cable Radio Network radio show, "Helen Harris Fighting Blindness" heard each Tuesday night at 7:00 pm Pac. time. On this telephone call in program, Helen offers advice, counseling, mobility suggestions and interviews Blind Agencies from all over the U.S. about services to the vision impaired.
Yet, despite her hectic schedule and commitments, Harris still considers talking to parents of children with RP her "Number One" priority. "Meeting with the President, with Congress, with movie stars -- this may seem glamorous to outsiders," concludes Harris. "But by far the most satisfying thing to me is knowing that I am working on finding a cure for RP while offering support to men, women and children whose lives are turned upside down by this disease. Helping people on the front lines -- battling for their sight or their children's sight every day of their lives -- will always be closest to my heart."
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