If you build it, they will come

| Steve Bieler

The first two words of the January/February 1969 Psoriasis Bulletin, forerunner of Psoriasis Advance, were: “Who cares?” The writer was Beverly Foster, the founder and first director of the National Psoriasis Foundation.

“There is a poignant theme running through nearly all of the hundreds of letters received by the Foundation,” Foster wrote. “Most of them are from persons afflicted with psoriasis for many years. … Implicit in almost every letter seems to be the question, ‘Who cares?’ Some of the complaints are bitter. Most letters are a ‘reaching out’ for help — a half articulated plea that something be done.”

The Psoriasis Society of Oregon (later the National Psoriasis Foundation) was founded in 1967 with the idea that something should be done. These pioneers (they called themselves “psoriatics”) decided that they were going to be the ones to do it.

They enjoyed talking to each other by phone, so they met in local restaurants and borrowed office space. They realized that they had a lot to learn about psoriasis, so they invited dermatologists to their meetings. They saw that almost no research was being conducted into this disease, so they started raising money for psoriasis research. And while they were doing all this, something amazing happened: They created a community. This is how NPF helped it grow.

50 years of opening new channels

The first Psoriasis Bulletin, published sometime in 1967, was typed on an IBM Selectric typewriter. It took up one side of a sheet of paper. It was folded into thirds by volunteers and stuffed into hand-addressed envelopes. With the January/February 2003 issue, the long-running Bulletin became Psoriasis Advance magazine. Today, the Advance is an award-winning, full-color, 56-page quarterly magazine that reaches more than 200,000 people each issue.

NPF went online in 1996 with psoriasis.org. Back then, people connected to us using dial-up modems. The new site featured a CompuServe email address and an explanation of how to “search.” Today, more than 3 million people visit our site annually to access articles through Advance Online and read first-person accounts of life with psoriatic disease through the NPF Blog. You can also watch free health webcasts and download files from our Fact Sheet Library.

For years, NPF had a lone health educator who answered questions about psoriatic disease and mailed relevant materials. In 2016, we launched the Patient Navigation Center, the world’s first support center for people with psoriatic disease. Our Patient Navigators offer personalized assistance to people from all over the world to ensure they receive the best care and support to manage their disease.

Early in our history, we established Correspondence Networks that linked people by phone and through the mail, thereby breaking through the isolation associated with psoriatic disease. Today, Psoriasis One to One can connect you to volunteers who have been through the same experiences. And TalkPsoriasis is the world’s largest online community for psoriatic disease patients, caregivers and family members, with 110,000 members and counting.

50 years of meeting in person

NPF hosts two successful education events that allow people with psoriatic disease to connect with others in their community while learning valuable information from health experts: More Than Skin Deep and Be Joint Smart.

Team NPF will get you out of your rut and into a fun circle of people. We cycle, run, walk, play bingo and create our own events to raise money for more psoriatic disease research.

The ultimate in-person event is our biennial National Volunteer Conference. The conference brings together patients, families, health care providers and caregivers to learn from the experts and each other, share experiences and create enduring relationships.

The first conference was held in 1988 in New York City with the theme “Mastery through Education.” NPF was a smaller organization then, but the event still attracted 250 people. The 2017 conference will take place Aug. 3-5 at the Swissôtel in Chicago, Illinois.

“Who cares?” those long-ago letter-writers wanted to know. That would be us — from the handful of people who met in Beverly Foster’s living room 50 years ago to everyone involved in the NPF community today. We have plenty of ways to keep on growing, and we’re not going away until a cure is found.

 


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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