Bridging the Gap Between Patient and Researcher

The National Psoriasis Foundation was created in 1967 by volunteers. For more than 50 years, patients, families, friends, researchers and health care providers have pitched in to help our cause. Volunteering takes many forms, from following us on Facebook to running with Team NPF to sharing your story with the people who represent you at the state and federal levels.

In this series, you’ll meet a crew who, in their own quiet, steady way, have been working hard to help everyone with psoriasis and psoriatic arthritis. Today: Carol L. Selby.

Growing up on an Indiana farm in the late 1960s, Carol Selby felt completely alone when it came to her psoriasis. It wasn’t until she stumbled upon a black-and-white newsletter from NPF that she learned there were others just like her.

Almost 50 years later, the retired financial analyst is making sure nobody with psoriatic disease feels alone. Selby joined NPF in 2016 as a community ambassador before becoming a research ambassador. In her current volunteer position, she interacts with doctors and researchers while showing them a human face of the disease.

Selby’s first outing as a volunteer was also her most memorable. She attended the U.S. Food and Drug Administration’s Patient-Focused Drug Development public meeting in 2016. There, she gave her patient testimonial in front of researchers and doctors. “Speaking to the FDA was truly a once-in-a-lifetime opportunity,” says Selby.

Selby attended the 2018 NPF Research Trainee Symposium in Portland, Oregon, as a guest on the patient panel. Again, she had the chance to talk about living with psoriasis to a room full of researchers. She says the symposium helps bring the two sides of the equation together and that events like these are invaluable to the development of new treatment options. “Not everyone in the labs gets a chance to speak with someone who has life experience with the disease,” she says. “While we are in a lot better place than we have been when it comes to treatment, we still have so much important work to be done.”

Editor’s note: NPF is currently not accepting any applications for the research ambassador program. However, if you would like to learn about research volunteer opportunities, contact us at research@psoriasis.org.

Photo: Violet Short @violetshort