Research Ambassadors show scientists the human side of psoriatic disease

| Steve Bieler

Most of us don’t have the opportunity to pull up a lab stool and chat with the person behind the microscope, but Research Ambassadors do. When NPF's Research Ambassadors sit down with a scientist, they put a human face on the disease. They also report back to the local psoriatic disease community on what scientists are up to and inspire fellow patients to become more engaged in research.

You don’t need an advanced degree in genetics or immunology to be a Research Ambassador. As the experiences of Eric Fielding and Archie Franklin show, all you need is curiosity and the willingness to volunteer.

A lifelong learner

Fielding, 54, of Herndon, Virginia, is a manager of training at a federal agency. He was diagnosed with psoriasis in his late 20s. “It began with one little red spot,” he says. “I didn’t think much of it. I used topicals and Cordran tape. But you tend to reach a critical mass of the condition, when you realize it’s serious and it’s going to get worse.”

Four years ago, before he started phototherapy in his dermatologist’s office, plaques covered his body. And yet he considers himself fortunate.

“I’m pretty lucky,” Fielding says. “About two or three years ago, I got a narrowband ultraviolet B, three-wing light box for my home.” He tried light therapy at his doctor’s office for six to eight months before arranging with his insurer to move the therapy to his home. He uses his light box two or three times a week, for less than 10 minutes each time, including the time it takes to turn the box on and off. “My psoriasis has diminished to almost nothing,” he says.

In addition to helping people with psoriatic disease, Fielding wants to build awareness for those without it. “People don’t understand the visual display of the disease,” he says. “I know the stress in the patient’s mind. I’ve seen the reactions of other people. I saw that if I got into a hot tub, for example, my spots would get redder, and people would get out of the tub. If you don’t understand psoriasis, it’s off-putting.”

Volunteering is a way of life for Fielding, who has been involved with NPF for about five years, helping put on Team NPF Walk and More than Skin Deep, where patients meet psoriatic disease experts, in his area. He also volunteers beyond NPF; among other activities, he serves on two boards for his hometown.

Fielding describes himself as “very inquisitive. I love learning.” Even before he became a Research Ambassador, he was involved with research. He’s on the Patient Stakeholder Committee of the PCORI-funded clinical trial studying home versus office phototherapy run by Joel Gelfand, M.D., a former member of NPF’s Medical Board and a professor of dermatology and epidemiology. (PCORI stands for Patient-Centered Outcomes Research Institute.) Fielding met Gelfand through a Citizen Pscientist meeting NPF hosted in Dallas in 2016. Citizen Pscientist is a global online research platform that lets you answer questions, analyze data and pose hypotheses.

Giving his time (and body) to science

Archie Franklin, 56, of Sanford, Florida, spends his days helping patients overcome hurdles with insurance and access to care. He works as an institutional account manager for dermatology and rare diseases at a health care education company. His routine includes regular visits in an eight-state area to large teaching institutions where patients are treated by dermatologists and oncologists.

Because he often finds himself in immunology or microbiology departments as part of his job, Franklin finds it easy to transition into his volunteer position once his work is done. “I can talk to scientists about all the grants NPF offers for promising research and encourage them to look to NPF as a partner in their research,” he says. “Eric [Fielding] always says I have an unfair advantage as a Research Ambassador!”

Franklin was diagnosed with psoriasis in 1989. It began on his scalp, possibly triggered by the stress of changing jobs the year after he got married, he says. By the time he enrolled in his first clinical trial for a biologic, in 2005, his psoriasis had reached the moderate-to-severe range, involving his trunk, back, tops of his thighs, knees and shins. “I was fortunate,” he says, echoing his friend Fielding. “It’s never been on my face.”

Like Fielding, Franklin is a natural volunteer. He’s been involved with NPF since about 2009. He’s spent time as an advocate, chaired a Team NPF Walk and helped run conferences; in 2010 he was nominated for Volunteer of the Year.

But Franklin has taken his volunteering one step beyond. He’s volunteered his body.

“My psoriasis [symptoms are] severe because of the way I’ve chosen to treat it — through clinical trials,” he says. “You have to do a ‘washout’ period of about six months before each trial. When you do that, your psoriasis comes back a lot more aggressively than it did the last time you had it, or at least it does for me.”

He’s been through several clinical trials. He more than once achieved a Psoriasis Area and Severity Index (PASI) score of 100 percent — meaning his skin was clear. So why not stick with what works?

“People think I’m a nutcase, but I want to help,” Franklin says. “I’m not a lab rat. By the time drugs get to a clinical trial, we are way past the rat stage.”

Franklin thinks a lot about the people he knows who struggle to get clear skin. “Ultimately, what the drug companies learn from me will help somebody else down the road,” he says. “This is one of the reasons I wanted to be a Research Ambassador.”

Become a Research Ambassador

Research Ambassadors serve two-year commitments in one of 17 markets across the country. Learn how to join the team.

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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