Step back into history with us. The year is 1966. Bob Dylan’s “Blonde on Blonde” is released. The National Organization for Women is founded. The Vietnam war continues, with Lyndon B. Johnson in the Oval Office. And in Portland, Oregon, Beverly Foster celebrates her 30th birthday.
Beverly’s then husband Larry’s gift to her was a classified ad in the local newspaper. He had grown tired of watching the frustration, pain and isolation of his wife’s psoriasis take away from her quality of life. Her treatment options were nearly zero. The future didn’t hold much promise, as research into psoriasis and potential treatments were hardly on the radar. What Larry could offer his wife – he hoped – was companionship and community.
It’s hard for us now, looking back, to understand the isolation and loneliness Beverly may have been facing. Because of the lack of treatments, people with moderate to severe psoriasis could find themselves with their entire body covered. In Beverly’s case, according to the former CEO of the National Psoriasis Foundation (NPF), Gail Zimmerman, 80 percent body coverage forced Beverly into trying nearly anything to find relief from the disease, no matter how fleeting and sometimes even dangerous.
In the weeks following the classified ad’s release, over 100 local people reached out to Beverly. The phone at the Foster house must have been ringing off the hook.
Psoriasis was the fuel. Larry’s classified ad lit the spark. Beverly’s spirit and determination spread the flames, which still burn bright and hot today. By 1967, Beverly had to move her small local gatherings to office buildings and public libraries to accommodate the growing group. That year, she founded the Psoriasis Society of Oregon, which would soon become NPF as you know it today.
Then and Now
Beverly certainly got the community she needed. Can you imagine how isolating psoriasis was at a time when so many thought it was contagious and didn’t empathize with the person experiencing it? In each other, Beverly and the others who started NPF found companionship. They found that empathy they so needed. The relief must have been immense.
Today, people who find themselves newly diagnosed can be paired with a mentor who has been through it all in NPF’s One to One program. Someone seeking to manage their disease or comorbidities can tap into NPF’s official online community at Kopa on Psoriasis. Those who need help navigating health insurance challenges or finding a dermatologist who understands psoriasis can simply call or email the Patient Navigation Center. Beverly would be quite proud and perhaps a little jealous of the opportunities to connect.
Research and Treatment
Of course, commiserating only gets you so far. Beverly and the dozens of others who made NPF what it is today were committed to finding solutions. If they were to get the relief from psoriatic disease that they so desperately sought, there would need to be substantial investments in research that would some day lead to more effective treatment options. You don’t have to be an expert in medical research to know that we have far more effective treatments for myriad diseases and conditions than we did a little over 50 years ago.
“50 years of dedication fighting for a cure reminds us that the arc of progress is long,” says Joel Gelfand, M.D., in the 2017 NPF: Our Mission video, a tribute to NPF celebrating 50 years of working toward a cure for psoriatic disease. Dr. Gelfand is the professor of dermatology at the University of Pennsylvania Perelman School of Medicine and a co-chair of NPF’s COVID-19 Task Force. “In the 80s and 90s we had maybe one or two treatments. In the early 2000s we had maybe three or four new treatments. Now, we’re getting dozens of new, effective therapies in the pipeline. It’s remarkable to bear witness to the progress.”
Last fiscal year, NPF invested $3.3 million in psoriatic disease and comorbidities research grants and fellowships, including a $750,000 investment in the Psoriasis Prevention Initiative, aimed at preventing the onset of psoriasis.
The Next Frontier
The systemic inflammation of psoriatic disease puts you at risk for developing comorbidities, from cardiovascular disease to anxiety and depression to obesity and type 2 diabetes. NPF invests not only research aimed at curing or preventing psoriatic disease, but also in efforts to fend-off these unwelcome related diseases and conditions. We want you to thrive with psoriasis or psoriatic arthritis, and that means preventing, screening-for and better understanding these comorbidities.
That’s why you will find several new articles about the comorbidities of those with psoriatic disease. None of it is meant to scare you or cause anxiety. Instead, we want to inform you and to share the message that thanks to today’s effective treatment options, you may be able to fend-off or avoid these foes.
You Play a Major Part in NPF’s Success
Regardless of the resilience and determination of our founders, NPF would not be where it is today, as the largest nonprofit funder of psoriatic disease research, representing and connecting a community of eight million in the United States, without the generosity of our supporters. Gifts of all sizes help NPF offer the support, education and research that bonds our community and moves us ever-closer to a cure.
In many ways, each one of you is Beverly Foster. Some of you are literally peers, and you understand the struggles she faced better than anyone. Others are left to wonder: If you had been born at a different time – a time with no treatment options and very little community connection – what would your life look like today?
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