History

HISTORY OF THE ORGANIZATION ~ A 40 YEAR JOURNEY (video)

It is apparent to the medical community today that widespread eye disease is a reality. One out of four of our elderly community suffers from a vision disorder, such as macular degeneration, diabetic retinopathy, uveitis, glaucoma or dry eye syndrome, and the victims of these diseases know there is sufficient knowledge at this time to prevent, treat or sometimes to even diagnose these diseases in a timely and effective way.
In the past, funding for eye disease research has lagged behind cancer, heart disease and other disorders.

This is probably because diseases of the eyes generally are not life threatening. Because of this, arguments to fund eye research may not have seemed as important. However, eye disease is finally being recognized as "independence-threatening." One look at the statistics readily demonstrates the major impact that effect has, both medically and socially in America (i.e. vision loss leads to thousands of cases of premature retirement and unnecessary institutionalization every year, adding significantly to medical costs).

RPI's long-standing goals for these diseases has been to hasten treatment, cure and, hopefully, re-storing sight to those patients already suffering from significant visual loss due to disease. RPI has helped fund research for corneal and retinal transplants, the computer chip implant, develop-ment of new low-vision aids, as well as giving victims of these diseases a better quality of life. RPI has also been instrumental in launching a new public outreach and education program to instill in the youth of today the desire to enter into the medical and healthcare fields serving thousands of citizens faced with the threat of blinding diseases.

Researchers, today, are aware of the need for low vision aids to be affordable, and miniaturization is a key goal, since bulky devices are unpleasant and difficult to use. Realizing that those most in need of vision aids are elderly persons who shy away from learning how to use complex technologies, scientists are placing priority on developing user-friendly and affordable vision aids.

Even though the costs of lost productivity and higher social service expenses are in the billions, only about two percent of the National Eye Institute's 1999 fiscal year budget is directed toward research into low vision and the development of optical and instrument aids.

Scientists are attempting to assess the role of carotenoids, compounds found in green and yellow vegetables, in the health of the macular pigment in the retina as well as retinitis pigmentosa. Hopefully, this research will provide early intervention strategies to prevent or postpone disease onset, and may also lead to better risk assessment among the general population. Unfortunately, this area of pre-clinical investigation has been under-funded. However, increased funding in the short term could produce new findings that could provide far less costly long-term ways of ameliorating eye dysfunction than is possible with current medical intervention.  

Preventing corneal graft rejection through molecular and genetic therapies, replacing damaged or destroyed retinal tissue by retinal transplantation, restoring eye cell function by replacing faulty genes, and creating smaller, less expensive and more effective low vision aids are some of the goals of "aging eye" researchers to restore vision.

Seventeen years ago few had ever heard of retinitis pigmentosa, or RP. That was before Helen Harris, however.

Today, through her Southern California-based organization known as RP International (RPI), the self-styled "ordinary Catholic housewife" has waged what can only be called an extraordinary two-decade old public battle to find a cure for RP and macular degeneration. These two degenerative eye diseases blind millions of Americans.
Finding a cure for RP in particular is no mere philanthropic cause for Harris. It's her life - or, at least it has been since the Woodland Hills, Calif. Housewife and mother of three discovered in 1972 that she and two of her sons were going blind.

"Even as a little kid," Harris said, "I couldn't see in the dark. I was a klutz after 4 p.m."
However, as a child Harris was agile, quick and an avid reader to boot. No one thought to connect her frequent tumbles, accidents and run-ins with trees after dark with eye disease.

"In Catholic school," Harris said, "I was regarded with suspicion by the nuns. I'd stand up to answer a question in a darkened room and knock something over in the process. It was off to detention room. They thought I was acting 'smart'."

Each phase of growing up brought new challenges, new humiliations. By the time Harris married, her vision problems had worsened considerably.

Guided by Her Children

Her neighbors might have assumed that, in leading her firstborn son around by the hand, she was merely being conscientious, she recalled. But, in fact, "my children, increasingly, were guiding me."

The crisis came to a head one Halloween night in 1972 when her 10-year-old son, Jim, came back from "trick-or-treating" rumpled and bruised. He had fallen down some stairs.

"I'm just like you, Mom," he told her.

Stunned, Harris realized the truth for the first time.

She had never met anyone who also shared the curse of "awkwardness" that had plagued her life. Now, she had. And it was her own son.

Doctors served merely to confirm her worst fears. She and two of her three boys suffered from a degenerative hereditary eye disease called retinitis pigmentosa. Medical specialists declared that RP has "no cure, no treatment and no hope."
Harris admitted to hurling a handbag at the physician who told her that.

Crisis of Faith

Her health crisis quickly became a crisis of faith for the Catholic housewife, as well. "I cried, prayed, screamed at God," she recalled.

But then, one of Harris' sisters sent her a rosary from the healing shrine at Lourdes. Remembering the example of her Irish mother's unflappable faith, Harris got down on her knees every day and said the rosary.

"I didn't believe one word I was saying," Harris said, "but I did it anyway."

Harris pleaded with God. "Show me the way," she said.

At one point, doctors assured her that the condition from which she and her sons suffered was so rare that funding for RP research was out of the question. But, a week later, Harris' prayers were answered in the form of an unsolicited phone call from the California governor's office asking if she would be willing to address groups around the state on the subject of eye disease.

"The gist of my early speeches to groups was pretty basic," she laughingly remembered. "It went something like this: 'Hey, I'm going blind. Help me!'"

In her early stumping days, Harris also took along some of her oil paintings - a pursuit she had taken up in 1970 but has had to abandon today, due to the progress of her disease.

Artistic Endeavors

Friends who admired her artistic endeavors urged her on. "If people know you paint like this, they'll do something. They won't let you go blind."

Nevertheless, Harris said her solo campaign to raise people's consciousness about RP, with or without artwork, "was going nowhere fast."

Then, in late 1972, the beleaguered campaigner sat down with her youthful sons.

"Listen," she told them, "I have RP. You have RP. Why should we just sit back and give up as the doctors have advised? Why don't we fight? There have to be other people with this disease."

Armed with the support of her family, Harris began to do public service announcements calling for a public campaign to raise funds to cure degenerative retinal disease. This time, it worked. The "ordinary housewife from Woodland Hills" was soon joined in her efforts by media heavyweights like Charlton and Lydia Heston, Bob Hope, Smokey Robinson, Dionne Warwick, George Burns and the late Sammy Davis Jr.

Her new organization, RP International, funded medical research programs at major universities, set up human services projects to aid those whose lives had already been impacted by degenerative retinal disease and launched the first RP telethon in 1982.

On June 11, 1989, all 50 states declared "Forgotten Eyes" Day in recognition of RP International's fight to end blindness. With the help of Sen. Alan Cranston (D-Calif.), the U.S. Senate passed a bill declaring the extension of Daylight Savings Time, a critical measure for those suffering from degenerative eye disease.
In 1990, Helen Harris secured the help of President George Bush in her fight to fund retinal cell transplants, one of the more promising of several experimental treatments for RP and macular degeneration funded by Harris' organization.

"Twenty years after I was told that my condition was hopeless," Harris declares, "we're now on the verge of making major medical breakthroughs in RP research. Everything the doctors told me in 1972 has been proven wrong. It's now possible to do something for the millions of people who suffer from degenerative eye disease. Now, at last, there's the possibility of treatment through retinal transplants."

Dr. James McGinnis, a professor of anatomy and cell biology at UCLA, explains, "Twenty years ago there were very few studies on the problem of hereditary blindness," he said. "But, given Helen's tenacity, and RPI, and federal dollars, more scientists got involved."

McGinnis admitted that it's not been easy to overcome the skepticism of the scientific community on the benefits of research into degenerative eye disease. But nothing convinces like success. And since 1968, when, for the first time epithelial cells were successfully transplanted to the retinas of blind rats, the tempo of research has been dramatically increased.

Basically, RP research has gone in two main directions, McGinnis said. One avenue has been genetics.

"About five years ago, we discovered a number of genes that are only active in visual cells," said McGinnis. "We began then to chart the structure of those genes through experiments on laboratory mice. A key defective enzyme was identified. And, just this past year, scientists at UCLA and Baylor College of Medicine in Houston successfully uncovered how the defective enzyme worked to kill off visual cells."

The Genetic Side

"The genetic side of retinal research still has a long way to go," McGinnis said. "But we're on the trail, we're on our way to breaking the hereditary chain," he added.

The other promising avenue of research has been in the area of retinal transplants - checking the progress of the disease by replacing those cells destroyed by disease with healthy ones.

After researchers performed successful transplants on lab animals, Dr. Gholam Peyman of the LSU Eye Center in New Orleans became the first physician to try such
transplants on humans. Peyman stressed that, "we're at the very early stage of experimentation," and, so far, "very few human transplants have been attempted."

However, he said that important lessons are already being learned. For example, so far, it's clear that the chances for improvement are substantially boosted if the patient's own healthy retinal tissue is used in the procedure rather than that drawn from an eye bank.

Peyman's work has also demonstrated that early treatment promises greater results. In any case, he said, "a lot of people are doing a lot of things in this area today."

Thanks to Helen Harris.

"As far as RP is concerned," says the 75-year-old campaigner, "I never think 'no.' I always ask, 'Why not?' As my Irish mother used to say, 'When God closes one door, He opens another.' Well, I walk through the door of RP every day. I can't sit back. I've got to move forward in faith."


In 1990, RP International staged the first exchange of information on a controversial (at that time) exploration into a possible cure for retinal degenerative diseases. Helen Harris brought five top researchers together at the Bel Age Hotel in Los Angeles: James E. Turner, Ph.D., formerly of Wake Forest University; Peter Gouras, M.D., Columbia University, New York; Manuel del Cerro, M.D., University of Rochester; Martin Silverman, Ph.D., formerly with Washington University, St. Louis; and James F. McGinnis, Ph.D. of the University of California at Los Angeles.

On Halloween Eve, October 30, 1996, researchers re-convened at the same hotel for a report on progress, exchange of ideas and a look into the future. Scheduled to share their knowledge were: David A. Newsome, M.D., Tulane Medical Center, New Orleans; Gail M. Seigel, Ph.D., University of Rochester; Jeffrey D. Radel, Ph.D., University of Kansas; Pamela Raymond, Ph.D., University of Michigan at Ann Arbor; and Marco A. Zarbin, M.D., Ph.D., University of Medicine, Newark. Returning was Martin Silverman, Ph.D. and moderator James F. McGinnis, Ph.D., RPI's leading researcher here at UCLA. In addition to the reports from the research scientists, the evening session addressed Living With Vision Loss with David S. Boyer, M.D., Ophthalmology; Louis Jolyon West, M.D., Psychiatry; Wayne W. Hoeft, O.D., F.A.A.O., Low Vision; and Joan Zeluck-Leeds, C.O.M.S., Mobility. Questions from the audience followed.

At the time of the first conference in 1990, the retinal cell transplant was not an accepted field of research. But, with Helen Harris' visit to the Oval Office, and President Bush's influence with the National Institutes of Health, as well as Helen's testimony with Dr. Gholam Peyman at the House Sub-Committee on Labor, Health and Human Services, the National Eye Institute was currently funding 17 projects researching the transplant at an award total of $3,235,531. Retinitis pigmentosa had grown hugely in the status of government supported research with 75 projects awarded over $16,000,000.

Anyone and everyone, sighted or vision impaired, with an interest in the Retinal Cell Transplant was invited to attend the October 30th conference.

GENE THERAPY UPDATE

Some researchers' goals are to develop gene therapies for treating ocular cancer, proliferative vitreoretinopathy, recurrent corneal epithelial erosions, corneal transplant rejection and chronic intraocular inflammation. They hope to begin gene therapy studies involving severe ocular surface allergies and certain forms of dry eye syndrome in the near future.

Some researchers have already begun studying the newly discovered principles of "immune privilege" (a tolerance for foreign tissue) in the eye. Because of this knowledge, genes and vectors placed inside the eye are better tolerated, thus allowing new and important therapeutic avenues in gene therapy to be more realistic. It is also felt that the ease of access to the eye makes it a prime organ for the introduction of genetic material.

Why are we here?

Millions of people, many of them children and young adults, find they are losing eyesight to "incurable," "hopeless," and "rare" eye diseases. It's hard to believe that as we approach the year 2000, these statements are still on the lips of ophthalmologists as they break the sad news to people each and every day.

The 2nd Retinal Cell Transplant Symposium was convened to re-establish the realities and possibilities within the reach of medical science to change the terrible hopelessness that has been a way of life in the diagnosis and treatment of previously "incurable" eye diseases. With the development of heart transplants, lung transplants, liver transplants, and the transplantation of cells and tissues for a variety of diseases, it appears among some scientists that the rebuilding of damaged retinas could become a possibility as medical science daily embraces miracles in every direction of medical research through the high-tech advances of the 20th century.

Why are we here? The answer was simple: to find the answers. To find the answers for ourselves, our children, their children and the millions of others who ask us for answers on a daily basis. For nearly a quarter of a century, RP International has been looking for the answers and has left no stone unturned in seeking out information on the possibilities of treatment for retinitis pigmentosa, macular degeneration and other degenerative eye diseases.

In the early years, the word "hopeless" was almost a trademark when applied to these diseases. Now, RP International's slogan is: "There's Hope In Sight," due, finally, to the recognition of the possibility of cell transplantation in the world of eye diseases and neurological disorders.

In pioneering the retinal cell transplant, RP Inter-national forged ahead, ignoring criticism and ignorance in helping to establish the first retinal cell transplant symposium in Los Angeles in 1990 at the Bel Age Hotel. Now, the National Eye Institute finally recognizes the worth of this research. When Helen Harris, with the support of President Bush, addressed the National Eye Institute in 1990, the response was not so positive. Today, the NEI is funding transplant research in the amount of $3,235,531. This small beginning leads us to the challenge now of putting the necessary funds into transplant research that will truly end degenerative eye diseases forever.

We salute the researchers who have won awards from the NEI, thank them for their support of this event, and thank them for their work in the avenue of cell transplantation research that will affect the lives of so many youngsters who stand and wait with hope in their eyes.


FIRST RETINAL CELL TRANSPLANT 1984

By  Gholam Peyman, M.D., LSU Lions Eye Institute

Black and white ... salt and pepper ... that's what Helene and I are. And we are Helen ... and she with an "e." How many pages of words could possibly explain what a friend is? The special fact that she is black and I am white only enhanced the reality that color does not matter in life. When I heard of the first retinal transplant operation in the U.S., the surgeon asked me if I wanted to be present. "You have to ask?" I screamed. Then I called the one person in the world I knew would go with me ... Helene K. Bean.

 We left for New Orleans in the morning .... excited. "How are you going to like going into a surgical suite in a hospital," I said to her. "Get out of here, girl," she answered. "Don't you go making me worry." And she laughed and laughed. What a beautiful laugh. It was hard not to be able to see my friend anymore. But when she laughed, her face popped right into my heart - then my eyes.

The night before the surgery we sat up talking. Suddenly I felt a hand lift my bare foot and place a pink satin slipper on it, then on the other. "Helene," I said, "did you bring two pairs of slippers?" "No," she said. "Then why are you giving me yours?" They matched her beautiful satin robe. She noticed my robe was not warm enough and my feet were bare. Sometimes when you are blind you cannot pick out the things you might like, like a robe...pretty and pink and satin. The slippers were another story. I just could not find them. When you are blind, this is hard, too. Especially if you are like me, on the run day and night looking for cures, talking to kids, encouraging friends and relatives not to give up. I forgot my slippers, and she slipped hers onto my feet. She noticed the little things.
The car pulled up in front of the hotel the next day, and we got in. After a short drive we stopped in front of the hospital and met the surgeon waiting at the door. His hands were small, he was lovely, and we were going to see the first transplant to be done on a human being.

It was so exciting. Then reality set in. "Okay, girls," the head nurse said, "there's the scrub room." "What's that?" I said. "It's where you need to go before entering the operating room." Oh, God, the operating room. I was feeling woozy. "Okay," Helene said, "let's go." On went the suits ... pants, tops, hats, rubber gloves and shoe cover-ups. My stomach began to tremble. Everything I owned was trembling! But Helene kept going. "Are you almost ready, Helen?" she said. "Here, let me help you." I was now not able to speak. I will never forget that walk down the corridor into the operating room. I could see the light ahead against the darkness of my now nearly completely gone vision. Doors backlit ... clear. They opened, and we entered. The old smell of alcohol and other stuff came rushing back to me. I remembered all those days and nights in the emergency room in Philadelphia - mostly at Misericordia Hospital - from accidents caused by my failing eyesight. Ugh! "Keep going, girl. This way." We were inside. Doctors were gathered around a sleeping patient. An 83 year old woman who had gone blind was to be the first patient to have the retinal cell transplant.

We were escorted over to one side of the room, and a special video lit the scene for me. The screen was dark, and when the surgery began I saw only a small light, like a cursor on a computer screen, going up and down ... moving. "Helene," I said, "what's that?" The answer nearly floored me.

"Girl, you do not even want to know," she answered. "Be glad you cannot see this mess. Mmm ... mmm ... mmm. I would not do this for another person in the world!"

"What do you mean?" I said. "Tell me." She could hardly talk. I realized that the sight of the surgery was clearly visible to her, and probably the scalpel was cutting through some part of the eye. "Whew," she said, "whew. It's a good thing you are my friend."

Success. The lady got back the ability to read print. The first success with the retinal cell transplant. Now, how could I get the world interested? There were few Helene Beans out there.

We left the happy doctor and patient and headed for the airport. I knew we had witnessed something wonderful. How lucky I was to have a friend like this to go with me. And to top it off, the satin slippers had kept my feet warm the night before. Little things ...

Shortly thereafter, when I began bringing doctors together, we went to Washington and finally got President Bush to look at the photos of the transplant. Then we appeared before the Appropriations Committee with my story and Helene was always there. Where has she gone ...

Through every trial I had, she was there encouraging me to go farther, to try harder, and never give up. She was my nightly and early morning voice of miracles. "You have not even begun to see the miracles that are coming your way," she said. Helene K. Bean was a miracle in my life.