Advocate in two worlds

| Steve Bieler

Barbara Butler of St. Louis, Missouri, is no stranger to dealing with people in authority.

She was diagnosed with systemic lupus erythematosus when she was 22. She turned this diagnosis into an opportunity by becoming an advocate for lupus patients and their families. She was an original member of the Board of Directors for the Lupus Foundation of America.

She worked to increase public and professional awareness while also counseling newly diagnosed patients, writing a book on child-rearing while coping with a chronic illness, and creating radio and television public service announcements about lupus. 

Butler brought her advocacy skills to the Foundation in 1981. She became an NPF member because her husband had psoriasis. "I took an interest in the cause because of him," she said, "and I stayed involved with NPF even after he and I were no longer together, because I believe in what this organization does." 

She was one of our first volunteers to advocate on a national level. She introduced Gail Zimmerman, then NPF’s executive director, to members of Congress and helped her secure congressional support for funding a skin disease research center (the first of several). 

Because Butler was already well-known to scientific leaders at the National Institutes of Health, she was able to help the Foundation win NIH funding for the first multi-disciplinary psoriasis research workshop to take place in the United States. The workshop, held in 1989 in Deer Valley, Utah, drew 40 researchers from Europe and the U.S., representing immunology, cancer, genetics and dermatology.

(The NIH thought so highly of Butler that they appointed her to the Director’s Council of Public Representatives, an advisory committee to the NIH director. The National Institute of Arthritis, Musculoskeletal, and Skin Diseases, or NIAMS, an institute within NIH, appointed her to their first Advisory Council.)

Butler was a member of NPF’s Board of Trustees and a veteran of Capitol Hill Day. She continues her involvement with several organizations and remains a passionate advocate for federal funding of medical research and professional training.

NPF Executive Director Gail Zimmerman; psoriasis workshop co-chairs Dr. Gerald Krueger, Dr. John Voorhees and Dr. Gerald Weinstein; and Barbara Butler at a Foundation awards ceremony in 1993.

You'll find Barbara Butler listed in 1981 on the NPF 50th celebration timeline.

 

The opinions expressed by NPF Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.


Driving Discovery, Creating Community

This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! 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 funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.

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