25 years of hope
From November/December 2004 Psoriasis Advance
In 1979, an idealistic young woman shaped by the public service ethic of the Kennedy era showed up for a job interview in her hometown of Portland, Ore. Fresh from jobs as a health care consultant in rural Alaska and as a research analyst for the CIA, the interview seemed like it would be good practice, but she wasn't terribly excited about it. The job, after all, was for a position as executive director of a tiny nonprofit organization that helped people with a disease she knew very little about. But she did take the job.
Gail M. Zimmerman, National Psoriasis Foundation president and CEO
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Twenty-five years later, Gail M. Zimmerman is president and CEO of the National Psoriasis Foundation, a vibrant nonprofit organization with an impressive record of educating millions of people, guiding and supporting psoriasis research, and forming deep partnerships with allies in medicine and industry. The Foundation provides strong hope for people with psoriasis and psoriatic arthritis.
"I just felt I could make such a difference for a community that was overlooked.
I couldn't leave." |
We at the Psoriasis Foundation join thousands of Members, doctors and others in thanking Gail for her compassionate leadership. In this interview Gail shares a few of the highlights, low points, hopes and challenges of a quarter century working with people with psoriasis to change their world.
The early days
"Before I was hired, five or six board members interviewed me, and I was so touched by their sincerity and their openness about their disease. I came into the interview pretty ambivalent, to be honest. The recruiting ad had not specified psoriasis, and if it had, I'm not sure I would have applied.
"When I took this job, I'd thought I'd be here a few years, get things stabilized and move on. What I didn't realize was the complexity of the disease and how hard this work would be. But I was immediately hooked. I just felt I could make such a difference for a community that was overlooked. I couldn't leave."
During the interview, no one had indicated to Gail the depth of the organization's
dire financial situation. Gail walked in on her first day as the second of two employees and was faced with fielding past-due notices from a stack of unpaid bills.
"At one point we had to send out a letter copied onto outdated 10th anniversary stationery, which was all the paper we had left. The letter said we would close the office and shut the Foundation down in 30 days if we didn't raise $30,000. Sure enough, we raised it. People sent it in $1 at a time, or with coins taped to note cards. It was such a testament to how much people needed help. In addition, we did our own fund raising?bingo games and other special events that allowed money to trickle in. In the end, it all worked out just fine."
| "I thought that once people knew about the Foundation everyone with psoriasis would sign up. But that wasn't true then and it isn't true now. Many people are still reluctant to get involved." |
Typewriters? Card catalogs?
When Gail started at the Foundation, advocacy was the organization's main focus. And while advocacy efforts were relatively successful, they weren't keeping the organization solvent. So Gail decided a new approach was needed.
"I believed that if we helped people first, by getting them informed, then it would be easier to get them involved. First, we had to build educational materials from scratch. It's hard to believe today, but there was just no information at all for people who had the disease. There was no Internet, no Google, nothing. We had to hunt down texts in medical libraries, work with doctors and begin crafting some information. And it was slow, difficult work. We typed everything on typewriters, and we couldn't afford a printer so we had to copy each sheet ourselves. We built the first comprehensive public database on the disease in the world—it has even been used by the National Institutes of Health to help inform psoriasis patients.
"I thought that once people knew about the Foundation everyone with psoriasis would sign up. But that wasn't true then and it isn't true now. Many people are still reluctant to get involved. The challenge has always been how to move people from 'help me' to helping others—we can have impact as a community."
| "The public is more aware of the disease and more accepting. We can communicate with our members through e-mail and the Web and we can recruit people instantaneously to help with important issues." |
Frustration, anger and then hope
In 1979, when Gail started, doctors decided what their patients needed, and patients did it. The primary psoriasis treatments were UVB, methotrexate, steroids and topicals.
"We saw a lot of really raging disease, horrible cases of psoriasis. Patients
were very frustrated about treatment. There was a lot of anger, and no hope, and people felt doctors weren't sympathetic.
"I would get so frustrated back then when I would hear a doctor say 'Why don't these people just live with it?' At that time, some doctors even tried to avoid treating psoriasis patients because they did not feel they could really help them.
"But today, it seems better. The public is more aware of the disease and more accepting. We can communicate with our Members through e-mail and the Web and we can recruit people instantaneously to help with important issues. And now, so many doctors are truly interested in treating psoriasis, and we are really working as collaborators with our Medical Board and the medical community to make things better for people with psoriasis."
Most moving moments
"The times I've shared with people with psoriasis, and the stories they've shared, those have always been so moving. I remember talking to this man who had terrible pustular psoriasis. He was completely alone, with no friends at all, because he was so embarrassed about his disease and because he was always so sick. I remember being so struck by his isolation. This hallmark of the disease inspired me to get and stay involved.
"But one of the most moving moments I've had with the Foundation actually happened in August of this year. I took our new research director and one of our early major donors to visit Anne Bowcock's psoriasis genetics lab in St. Louis. We went into this big lab of about five rooms making up around 5,000 square feet, filled with DNA freezers, sequencers and high-tech machines that are worth hundreds of thousands of dollars—each. And there were six or eight different people working in there, all of them completely dedicated full time to psoriasis genetics.
"The seed of the future was right there in front of me. Because when we started, there was no one, and I mean no one, in this country working seriously on psoriasis genetics. We now have two labs working on psoriasis genetics—Dr. Bowcock's lab in St. Louis and Dr. J.T. Elder's at the University of Michigan in Ann Arbor. And it's happened in great part because of people with psoriasis through this organization—they helped to make it happen with their money, their time, even their DNA."
Unexpected people that have made a difference
"In the early '80s, I received a clipping about Nancy Wexler—the scientist who led the discovery of the gene for Huntington's Disease. I don't think I had even really heard of genetics research before that, but I started to follow the Huntington's story. Then, about a year later, a scientist at Oregon Health & Science University in Portland, Ore., sent us a grant request to support his work to find the genes for psoriasis.
"The awareness I'd gained made me much more supportive of his grant request, and I encouraged the Board of Trustees to approve it. So we gave him a grant, he began his work, and we were on the genetics path. That led us to collect and distribute thousands of blood samples through our National Psoriasis Tissue Bank, which last year resulted in the announcement of the discovery of the first genes for psoriasis."
New plans, strategies and hope for the future
"The challenge for the Psoriasis Foundation now is to keep building its support of research. To do that, we've gone back to the beginning by rebuilding our advocacy and fund-raising arms. We couldn't build those pieces until we built a more connected psoriasis and psoriatic arthritis community. Today, I feel the organization and the psoriasis community can now mount a truly successful grassroots effort. We have the organizational structure and credibility, and people with the disease and their families are informed, optimistic and ready to get involved. What we can accomplish through our combined energies is what motivates me today."
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