Chapter 8 – National Psoriasis Foundation

For many years, the National Psoriasis Foundation has worked to change the way psoriasis and psoriatic arthritis patients are welcomed and treated.  It is the largest nonprofit agency to focus on the problem of psoriasis, and it is supported by the donations of thousands of members.  The organization started in 1966 and the headquarters are located in Portland, Oregon.  The staff is dedicated to collecting and organizing information about psoriasis, it’s effects, and its treatment.  A major goal is the dispensing of the information to the people who need it most: patients with psoriasis and the doctors who treat them. The staff at the national headquarters considers itself to be the advocate for the large number of Americans who suffer from psoriasis or psoriatic arthritis.  They are not medical professionals, but have experience in areas such as public relations, finance, and publishing.  More importantly, each staff member has a strong link to the disease, either they themselves or someone very close to them. The foundation began on the thirtieth birthday of Beverly Foster, who suffered from severe psoriasis.  Her husband ran an ad in the classifieds in Portland in order to find other patients with psoriasis that Beverly could share her experiences with.  It might seem like a strange birthday present, but at that time it was not a well-publicized condition.  In addition, Beverly had only a few treatment options available to her at that time.  This report has not emphasized the pain and discomfort in many cases of severe psoriasis, but it is a condition that can be viewed as a constant unwanted companion.  Finding several people who could sympathize and understand Beverly’s life was important to both Beverly and her husband.  The ad generated more than one hundred responses during the week first week that the ad ran.  Since there was so much interest, meetings were organized so that the people with psoriasis could start exchanging information and support.  After some months, the Psoriasis Society of Oregon was formally begun.  Soon after the meetings began, it became clear that there were two very important areas for the society to address.  The first was to educate the public about what psoriasis was, how it was different than other simple skin diseases such as dandruff, and how it could be managed.  The second area was that there was little notice in the medical community about psoriasis, and very few research projects or research monies dedicated to finding new treatments for the disease and its symptoms. A year later in 1968 the National Psoriasis Foundation was officially begun, and its first goal was to raise funding for research on the disease.  The organization in Portland marshaled a group of physicians, researchers, and enthusiastic volunteers to begin raising awareness for the need of more scientific study on all aspects of psoriasis.   It was a good beginning, but there were difficult times ahead. In 1979 nearly all of the staff had quit, and both the finances and the building that housed the foundation were in bad shape.  There was a new president that was hired to man what seemed to be a sinking ship.  Writing letters to the many inquiries about psoriasis gave new inspiration that the Foundation was still an important idea, and what they needed was to get funding. Another round of letters asking for any kind of support, and got responses that ranged from changed taped to cards in an envelope up to checks of a thousand dollars.  The next several years were a continued struggle, including a struggle with the medical community. A few doctors saw the value of the organization, but many others felt that we were unnecessary, irrelevant and intruding on their territory. “I recommend the Psoriasis Foundation fold-up.” one doctor said to me, “It’s too hard for you.” The years passed and by the mid-1980s the Psoriasis Foundation was the number one resource for consumer information. We began a program to train nurses to administer phototherapy correctly so that no more patients would suffer harm. Thousands more people joined the Foundation as members. The Foundation still only has one office, and that remains in Oregon.  However, staff members travel the country in order to bring this important information to where it will do the most good, whether lobbying on Capitol Hill or regional gatherings of doctors and dermatologists that treat patients with varying levels of psoriasis. With a distinct on-line presence, the Foundation is still easily accessible to anyone who wants any information about psoriasis.  The web pages have areas for physicians, for patients, and for the general public, and several good publications that are worth reading by everyone.  Since the Foundation has been on-line for some time, it serves the international community as well as the community in America.