The researchers who quietly made history

| Steve Bieler

John Voorhees, M.D., has been chairman of the Department of Dermatology at the University of Michigan Medical School since 1975, and his interest in psoriasis genetics dates back just as far. He remembers the inch-by-inch progress of that era. 

“Our rule of thumb was, ‘Unless you really have a good idea, don’t do the research,’” he said recently. “We were forced to rely on educated guesses, not molecular genetics.”

He also remembers how hard it was to find funding for psoriasis research in the ’70s and ’80s. “The National Institutes of Health wouldn’t fund research because, they told us, psoriasis was ‘too complicated.’” 

In the ’80s, Voorhees, a member of NPF’s Medical Advisory Board, had several conversations with then-NPF Executive Director Gail Zimmerman about the need for psoriasis genetics research. Zimmerman, who retired from NPF in 2007 after 28 years as executive director, president and CEO, agreed. But how could a tiny organization like NPF create a critical mass of researchers? And where would it find the money? Up to that point, “we’d been funding pre-doc and post-doc fellowships, just small grants,” Zimmerman said.

To answer these questions, Zimmerman turned to a simple strategy — it’s not what you know, it’s who you know. She asked NPF’s Board of Trustees (now Board of Directors), “Does anyone have any connections to the NIH?”

Someone did: Jon Hanifin, M.D., who has been a professor in the Department of Dermatology at Oregon Health & Sciences University in Portland, Oregon, since 1971. “I had NIH funding by then,” Hanifin said. “I was doing lots of research, so I was able to help Gail that way.”

A psoriasis summit meeting takes shape

In 1988, Hanifin and Zimmerman went to a meeting at NIH. Someone — no one knows who — suggested that NPF host a psoriasis summit meeting to gather psoriatic disease researchers and scientists from other disciplines. The meeting would build NPF’s credibility and help expand the horizons of psoriasis research. Young researchers would be invited as observers to stimulate their interest in psoriasis.

Zimmerman recruited three co-chairmen from NPF’s Medical Advisory Board: Gerald Krueger, M.D., from the Department of Dermatology at the University of Utah School of Medicine; the late Gerald Weinstein, M.D., chair of the Department of Dermatology at the University of California, Irvine; and Voorhees. They prepared the format for the meeting and issued invitations.

The hard work of the chairmen and other volunteers paid off on Sept. 14, 1989, when 33 doctors and scientists gathered in Deer Valley, Utah, for the Psoriasis Workshop (subsidized in part by the National Institute of Arthritis, Musculoskeletal and Skin Diseases, one of the institutes that make up the National Institutes of Health). Sixteen attendees were dermatologists, while the rest came from molecular biology, biochemistry, genetics, immunology, inflammation and pharmacology. 


Psoriasis workshop brain trust (left to right): Krueger, Voorhees, Zimmerman, Weinstein

The November/December 1989 issue of the Bulletin, forerunner of Psoriasis Advance, reported on the event.

“Non-dermatology experts proved eager to attend. They welcomed the opportunity to hear about psoriasis and were keenly interested in learning what problems it presents to scientists studying it. Dermatology researchers hailed the gathering as ‘long overdue.’ One said, ‘I gained an appreciation for many areas directly and indirectly impacting on psoriasis. I met and exchanged ideas, data and approaches with numerous scientists that I otherwise would not have been exposed to.’” 

Another dermatologist said, “Coming to this meeting is like reviewing all the recent literature without opening a book!” 

The summit births an idea

In an informal history of NPF, Zimmerman recounted, “At the end of the meeting, representatives of each discipline were invited to meet with myself and conference chairs to get their views on where the Foundation could be most useful to advancing research. A physician from the National Cancer Institute strongly urged the foundation to set up a gene bank that could supply researchers with DNA samples [to help] identify the genes linked to psoriasis. 

“He said the collection of gene samples was difficult, tedious and expensive work that was out of the reach of many researchers. It was an ideal task for a nonprofit like the Foundation. The Foundation would be providing a research tool that could attract more scientists to psoriasis research.”

NPF eventually awarded a grant to Alan Menter, M.D., at Baylor University to set up a gene bank. Krueger was the dermatology advisor for what became in 1994 the National Psoriasis Tissue Bank — today’s National Psoriasis Victor Henschel BioBank. It was the first public repository of psoriasis genetic samples.

In 2003, Anne Bowcock, M.D., a geneticist at the University of Texas, along with Menter and their colleagues, backed by NPF funding and using samples from the bank, identified the first three genes linked to psoriasis susceptibility. This breakthrough — and the active research environment we enjoy today — descends from a long-ago scientific gathering at a ski resort in Utah, by the volunteers who made that meeting happen, and by some timely networking. 

(Note: In 1993, the NPF honored Krueger, Voorhees and Weinstein “for their pioneering work in the field of psoriasis research.” At our 50th anniversary gala in June 2017, Krueger received the “Most Influential Physician” award for his longtime service to NPF.)

Other stories in this series:

Community

Mothers and daughters

Fundraising

Top photo, left to right: Voorhees, Krueger, Weinstein, Hanifin

 


Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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