History (timeline of research)

A Message from Helen Harris

 

Dear Friend:

Video "History of RPI Timeline"

In 1980, I came across a physician in Rochester, New York. His name was Manuel Del Cero. A very small article in the local newspaper talked about Dr. Del Cero and his phenomenal and controversial new work on medical research called "Stem Cell Transplantation." I have called every physician that had any interest in medical research regarding eyesight for the past 35 years. There were many doctors scattered in small labs throughout the United States and Europe working quietly on this "stem cell" idea. Dr. Del Cero came to see me, and we had a long talk about the stem cell as a potential cure for the blindness that affects me, my children, and approximately 26 million others.

 He was wonderful. He explained the process to me and I knew in my gut that this process was probably the only process that would regenerate and restore eyesight.

I began to scour ever paper, every article, every television show for more information regarding the "transplantation of cells," not only for blindness but for any disease, such as Parkinson's, Alzheimer's and other neurological disorders that are currently "incurable."

 My belief was, and still is, that if stem cells could be used to cure Alzheimer's or Parkinson's, it would definitely cure blindness. They are all the same type of horrible degenerative diseases. I was very sure, from the day I met Dr. Del Cero that this was the solution. I put him together with six other doctors to form the first ever stem cell transplantation team. Over the next 10 years, we worked incessantly to try to get funding for this process.

In 1984, I went to LSU and actually "gowned up" and went into the surgical suite where Dr. Gholam Payman took cells from the peripheral part of a female patient's own eye and inserted them into her macular (the central part of the eye) in hopes of restoring her vision.

Helene Glenedan, the Social Secretary to Lydia and Chuck Heston, was the only one willing to go with me to New Orleans, meet the patient and sit through the surgery. Helene and I had become "Soul Sisters" and best friends. There wasn't a single night she wouldn't call me to talk and laugh about "life" and express her hopes that this research would be the cure for Retinitis Pigmentosa.

The patient did not get all of her sight back, but her world of darkness had a glimmer of light. She still had trouble getting around, but she was seeing.

She got enough sight back that would make most people who are blind very, very happy.

We were invited back to LSU a year later. We were met at the airport by the very famous New Orleans band that they had at the hospital. Celebrities were with me as well as board members of RP International. It was a very mighty celebration that RP International was opening the first ever RP International Cell Transplant

Lab with a donation from a very wealthy Middle Eastern person who suffered from Retinitis Pigmentosa. I can still remember the feeling as Dr. Payman led my hand across the embossed words "RP International Stem Cell Transplant Laboratory" on the door. It was one of the happiest days of my life.

We visited the patient to see how she was doing a year after her procedure. The woman was crystal clear about her vision. She told us she could see nothing before the surgery, and now she had enough of her eyesight back to thread a needle or read print. We tested her in many ways, and it was unbelievable what a difference the surgery had made.

Her daughter, son, and son-in-law came rushing over to her home believing that their mother was being interviewed by yet another "negative and harassing" reporter. I was very impressed meeting her whole family, and I must confess, a little scared at first, because they'd been through so much. Apparently, she had been harassed by the neighbors and newspapers making uniformed comments like "fetal cell abortion eyes," "dog cell eyes," and "Frankenstein surgery."

All of this was very, very far from the truth. I met the whole family and they were wonderful. The family did not want to put her name out in the public for fear of further harassment, and we respected their wishes. I went back the following year to visit her again, and she was still seeing. She saw until the day she died.

We knew we had begun to splinter the rock solid mentality that degenerative diseases were "incurable." However, the next year the Lab was slowly dismantled. The funds were distributed to a different part of the university. It was, I'm sure, one America's best held secrets. Large donors are very much respected, and if they do not like certain processes they will withdraw funds. The National Eye Institute and The National Institute of Health are basically the same way.

A call from the White House led to a visit to the Oval Office.  My son Richard, 5 year-old Michelle Berk, and I walked up to President George Herbert Walker Bush and were greeted by a smiling, happy "grandfatherly" type of man who was gracious and gentle. He took my hand and said, "Helen, I have been reading up on your work. You are doing a good job." He took Richard and little Michelle by the hand, sat on the sofa, and listened to the song that we had put together with Bob Hope, Smokey Robison, Patti Labelle, Sammy Davis Jr., Marilyn McCoo,Billie Davis, Mel Torme, Jack Jones, Mickey Dolenz, Sister Sledge, Cheryl Ladd, Connie Stevens, Barbara Eden, Gene Dickinson, Steve Allen, Jayne Meadows-Allen, and 100 other stars.

Bringing that song together was another "Helen's kitchen table event." I called one celebrity after another and asked them if they could come and sing a song called "Forgotten Eyes" for the children. Fortunately for me and the children, these and other people came forward and gave us the opportunity to have the first song ever for Retinitis Pigmentosa.

Over the years, I met with doctors and researchers regularly, and as they began to gain more hope about their work, they became less shy about discussing it front of each other. At that time no one went to ARVO to discuss cell transplant, because brilliant American eye doctors, scientists, researchers, and ophthalmologists were being labelled "voodoo medicine men" by far too many.

In a meeting with Laura Schuler-Donner, I was telling her about stem cell research when she said, "This might help Chris Reeves." And I agreed - if we could find a cure for any one of these diseases; it might flow over to some of the others such as Retinitis Pigmentosa or spinal cord injuries or Parkinson's. Over the years, I got every story I possibly could on stem cell research into newspapers, radio and television, until finally, and very suddenly, the funds began to come forward. We were raising funds and creating awareness of stem cell research through this very Vision Awards. We give out two or three scientific awards to outstanding physicians every year for past 35 years. It is still amazing to me how many doctors and scientists have told me off the record, "If you can promise me I will have a retirement and funding for this work, I will stop what I am doing - all these other fundraising projects at the University - and do your stem cell research right now, because it is the way to cure Retinitis Pigmentosa, macular degeneration, and other diseases." Of course he was talking to just Helen Harris.

Not a multi-billionaire with the funds to make this happen. Many of these Doctors have said the same thing over and over again. Not only did they believe that stem cells would cure RP, but that it was the future cure for many diseases.

101st Congressional Testimony on behalf of Retintis Pigmentosa Int'l.  Right to left, Robert Harris, Dana Elar, Helen Harris, Gholam Peyman, M.D. LSU Lions Eye Center.

Dr. Peyman recently said to me, "Helen, had anyone listened to you 20 years ago, RP would have been cured by now." That was not an easy pill to swallow. I can only say to our audience this year:

Let's not let another year go by where the stem cell gets set aside!

We need to make sure funds go to the right doctors and the right universities where people are taken off of the waiting list and put on to the operating table.

That is what we did for Todd Heritage. When we brought Todd up onstage at the Vision Awards several years ago, he had been blind for 22 years, but with the stem cell implant Todd got back 100% of his eyesight. It was totally supported by ABC television and his own eye doctor who had that ability, skill, and courage to go ahead with the adult stem cell transplant without all of the repercussions that other scientists had suffered because they were doing stem cell research in a time when it just didn't fit into the media criteria or mindset of narrow minded individuals who held the purse string of progress in medical research.  (click to play ABC Miracles segment)

In other words, no one dared to jeopardize any of their grant or donor money and have their lab fail to "step up to the plate." No one except for Dr. Gholen Peyman. He was extraordinary. Dr. Peyman told me once, "Helen, if people can see through just the macular of the eye, they would be able to thread a needle, be able to read print and see faces. We would work backwards from there until the whole eye is cured." For me, that means painting again, reading a book again, seeing my children's faces again, and being able to watch that rose I planted in my own yard grow into difference shades of lavender, pink, crimson, and often pink white. There is just so much that can be seen when the smallest amount of eyesight becomes available.

Today, stem cell has become a household word. We can only hope that the people who are getting hundreds of millions of dollars now in stem cell laboratories around the country use it in the way it was supposed to be used and that the cure for these terrible diseases will be found. The progress of stem cell research is the product of great effort of a fearless, tiny few who resisted the name-calling, the ostracizing and all of the negative name tags that were put on RP International.

We found the cure. Now we need to fund it.

I can't wait until the day my own eyes are staring up in the darkness at a surgeon who I cannot see to receive the stem cells that will change my disturbingly black world into the face of the surgeon who has given back my vision.

Sincerely, 

 

Helen Harris
President and Founder
RP International Fighting Blindness