When the National Psoriasis Foundation (NPF) was established in 1967, there were few outlets for people living with psoriatic disease to find educational resources and get support. In an interview for our 50th anniversary celebration, former NPF Executive Director Gail Zimmerman remembered her early days at the Foundation, when she would try to figure out how to help those who called or wrote in.
“When I first came [to NPF in 1979], people would call. They were desperate,” said Zimmerman. “We’d get letters — stacks of letters. And in these stacks of letters [the words] HELP ME…HELP ME, huge, big bold capital letters. HELP ME…HELP ME. I NEED HELP.”
With the help of Ken Halprin, M.D., the first chairman of the Medical Advisory Board, Zimmerman responded to every person who contacted NPF. “Ken stayed right in there with me. I’d call him any time, day or night. And he would help me or give me advice. He even called patients that I was just completely dumbfounded about how to handle.”
According to Zimmerman, people who contacted NPF were desperately searching for educational materials about psoriasis. “I remember people calling me up, saying, ‘I’m so sorry to bother you. I don’t want to take your time. I just wanted a little pamphlet on psoriasis,’” she said. To each person, she responded, “Well, that’s what we’re here for.” Yet there was still a common sentiment among the people who contacted the Foundation — they were embarrassed, apologetic and uneasy about bothering NPF. “That’s where we started from,” remembered Zimmerman. In addition to educational materials, people were also looking for support. “They wanted information, but they [also] wanted to talk,” said Zimmerman.
“They wanted somebody who understood what they were going through. They were very disconnected from each other, because they were afraid to tell their neighbors or their teachers or anybody that they had [psoriasis]. They knew they’d be laughed at, or people would shy away.”
NPF fills the gap
As the Foundation continued to grow, these common themes have evolved into core NPF programs. “Initially, we didn’t try to push people together,” said Zimmerman. “That’s why [we created] the pen-pal program. You could talk on the phone. You could write a letter. You don’t have to go anywhere. You don’t have to see anybody.”
Then a few patients drove to the Foundation’s office in Oregon from states like California and Wisconsin to ask about forming support groups, Zimmerman recalled. “But [they didn’t] want to call them a support group, because [to them] that implied that you were weak or vulnerable or somehow inferior. So, we started calling them networks.” This led the way for the establishment of NPF’s community divisions.
Fifty years later, education, connection and support are present throughout NPF. Before the creation of the Patient Navigation Center, NPF had a health educator on staff to answer questions submitted by people living with psoriatic disease.
In 2009, NPF created its Psoriasis One to One program, which matches people who are newly diagnosed with others who have lived with the disease for years to offer personal guidance and support.
And most recently, in 2016, NPF launched the Patient Navigation Center, a resource and support center for all people impacted by psoriatic disease. Our Patient Navigators work one on one to help patients and their family members manage the unique issues that accompany living with psoriatic disease — including finding specialists, learning about treatments, handling insurance issues and getting emotional support. Services are free and available via phone, email, text and live chat.
As technology advances, there are now more ways than ever for people to find information, get help managing their disease and connect with each other through NPF. What began in Zimmerman’s office during the 1970s has grown into a core part of what NPF is today — providing support to our community members and reminding them that they are not alone.
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.