“You have to know the past to understand the present.”
The National Vitiligo Foundation Inc. (NVFI) was conceived in September 1985 by Allen and Nancy Locklin in Tyler, Texas. The Foundation operated out of Allen’s office for fourteen years, and grew to more than 8,000 members. In 1999, Allen gifted the foundation to Trinity Mother Frances Hospital Foundation. There, the Foundation hosted several Family and Friends Conferences and maintained it mission of patient resource provision, advocacy and research funding. In 2004, the Board of Directors felt the Foundation once again needed to be a stand-alone organization. The Foundation moved to the offices of the chairman, Dr. Ronald S. Davis, M.S., M.D.
As a frustrated vitiligo patient in the early 1970s it became apparent that very little information was available and very little research was being done on vitiligo. As most patients were told in the 60’s and 70’s and still some today, “You’ve got vitiligo. Just learn to live with it. There is no cure. Just be thankful you don’t have x, y or z.” Not very encouraging.
After seeing my vitiligo spreading rapidly, I became a recluse from the sun for two years. A nurse friend said, “If I had something like that, I would learn everything I could about it.” That made sense, so I began my search which led me to the key people in vitiligo.
My first contact was with Harvard University at Massachusetts General Hospital. I talked with Dr. John Parrish in the Dermatology Department. He told me that they were doing lots of work in vitiligo and were having some encouraging results. I asked for an appointment and round-tripped Tyler-Boston-Tyler in one day, one long day.
At Massachusetts General, I met with Dr. Parrish and Tom Fitzpatrick, M.D., the chairman of the Dermatology Department. Tom was known around the world for his work in dermatology and vitiligo in particular. I met with them for no more than 40 minutes and was greatly uplifted by what they told me. They were using the old standby Oxsoralen in much greater dosages than normal amounts. Where doctors that even wrote psoralen prescriptions, 10 milligrams was the maximum treatment, used two hours before going out into the sun. Harvard was using 40 mg. and getting fairly good results and no apparent serious side effects.
I began my repigmentation efforts with the 40mg/day, and, as they promised, I had pigment freckles around the hair follicles in 21 days. By dedicated effort, I gained back 95 % of my pigment in four months. I continued to treat for the next several years, but after some serious setbacks and deep burns, I quit treatment.
Still frustrated, I knew only research funding could help. I decided that Nancy, my wife, and I would help in that way. I got the names of places working on vitiligo research and where large numbers of patients were being treated. Those were Yale, Cincinnati and Howard Universities, along with Harvard. I contacted the key people and went to see them. I met with the most widely known researcher and chairman of the Department of Dermatology at Yale, Dr. Aaron Lerner, an extremely smart and congenial man. We had a good exchange, and he assured me that any funds given would go directly to research. Similar meetings were held with Jim Nordlund, M.D. and chairman of the Department of Dermatology at Cincinnati, Rebat Halder, M.D. at Howard University, and Fitzpatrick at Harvard.
I came back to Tyler quite uplifted by these meetings. These doctors cared about those of us with vitiligo, and they were doing things about it. I did see a different focus on what I felt I could do. A one-time contribution only would be a drop in the bucket toward the need.
It was at that point that I decided that a foundation was the answer. Based on statistics over the world, it was estimated that 1-2 percent of the population had vitiligo – so millions were out there. If only a small percent were willing to contribute, we could fund large amounts of research to improve treatment and even cure vitiligo. In turn, the foundation would be the leader in supplying patients and doctors with up-to-date news as well as patient counseling.
I turned to my friend, attorney Bob Dobbs, and together we began the work in getting registered properly and a tax-free exemption. I then contacted the four doctors at the various universities, told them of my plan, asked each one to be on our Medical Advisory Board. All agreed to do so. I also asked Dr. Bob Rossman here in Tyler to join us on the MAB and foundation board. The prominence of these men around the world gave us immediate credibility. The local board then included Bob Dobbs, Lee Ann Shaver, Nancy Locklin and The Honorable Judge Tom Ramey Jr. in addition to Dr. Rossman.
Our organization, The National Vitiligo Foundation, Inc., began in September of 1985. Nancy and I opened its bank account with a $20,000 gift. We housed it in my offices at Heritage Bank in Tyler, Texas. My secretary helped until the mail and phone calls became very large. We were fortunate to have a volunteer, vitiligo patient Jan Davis from Big Sandy, who came on board to help us. I financially carried the NVFI until the second or third year when it could help with rent and overhead and until it became completely self-sustaining. We hired a full-time Executive Director/CEO around 1987 and have had one since.
THE EARLY YEARS
Early on we had support groups around the country, but it was difficult to keep them on course. We tried, but it was hard to motivate patients. Nancy and I attended every American Academy of Dermatology Convention from 1986-2000. It got us on the map, and we met doctors from around the world. At one time, we signed up more than 600 to receive our newsletter and had their promise to tell their patients about us. It always was very rewarding.
Early on we also expanded our Medical Advisory Board, adding Dr. Pearl Grimes; John Kenney, MD; Lawrence L. Anderson, MD; Jean-Claude Bystryn, MD; Ronald S. Davis, MS, MD; Amit Pandy, MD; Madhu A. Pathak, MD, PhD; S.S. Bleehen, Seung Kyung Hann, MD, PhD; Leopoldo F. Montes, MD, MS, FRCPC; Giovanni Orecchia, MD; and Jean-Paul Ortonne, MD.
Over the years, NVFI has been covered by the television media in Tyler, Nashville, Dallas (60 Second House Call), Jerry Springer, Dr. Donahue and Dr. Abby, CNN twice, CBS and others. Texas Monthly magazine also wrote an article on vitiligo and the NVF. When Dear Abby spotlighted us, we got around 15,000 letters and umpteen phone calls. It took Nancy and our director, two volunteers and me six weeks to process the mail. When Dr. Donohue spotlighted us, as he has two or three times, we usually get 3,000 or so letters.
We are grateful for all the support you have provided us over the years. We try desperately to respond quickly to every inquiry we receive. Approximately 500 visitors seek out our website daily; yet so few donations flow in. Research is the key to this frustrating, psychologically-devastating disease. And to fund research, we need your money and your help.
God Bless and Good Luck,