Bridging the gap between patient and researcher

| Chris Paoli
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. 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. 
 
More recently, 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, email [email protected]
 
An online community is waiting for you
Chat online with others who get what you’re going through. Join the TalkPsoriasis community.
 
 

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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