Why We Need This Community

| Steve Bieler
The National Psoriasis Foundation (NPF) has been blessed with a wealth of dedicated volunteers. They have psoriatic disease, or they are taking care of someone who does, or they are investigating the disease or treating their patients. They participate in our programs, figure out ways to raise money, stand up for our community and help newly diagnosed people. Their contributions are the fuel that keeps NPF going.
 
This year for National Volunteer Week, we spoke to Tami Seretti, NPF 2019 Outstanding Volunteer Leader. We asked Seretti, who has spent most of her life in the Pittsburgh, Pennsylvania area, and who has lived every day for more than 20 years with psoriatic disease, about why she decided to become a volunteer, how she got started, and what she most enjoys about helping our community.
 
NPF: You have psoriasis and psoriatic arthritis. Your mother, who is 87 and on oxygen, lives with you and your husband. Why did you take on these extra volunteering responsibilities?
 
Seretti: I had psoriasis for 20 years before I found out about NPF. Before that, I had never talked with anyone with psoriatic disease. But when I joined NPF in 2016, I received an invitation to participate in a day-long event at the Food and Drug Administration (FDA) called the patient-focused drug development meeting. The FDA was going to focus on psoriasis and NPF needed patients to participate. Well, I didn’t know anything. I didn’t know anybody. Nothing. But I wanted to make a difference, so I went.
 
First we had a meet-and-greet, and people introduced themselves. A longtime NPF volunteer named John Earley talked with me for a while and then said, “By next year, you’ll be volunteering.”
 
I said, ‘Yeah, right.’ I’m not the volunteering kind. I’m more of a wallflower. But then Carol Selby came up to me and said, “My husband and I saw you standing alone, and we thought it was time to talk to you.” Carol and I became really good friends.
 
That FDA event literally changed my entire life. It gave me the courage to talk about psoriatic disease. It made me want to do something about it.
 
NPF: What sort of events did you do after that?
 
Seretti: I became a community ambassador, then I dived into Psoriasis One to One as a mentor. Talking to people about psoriasis – people who have just been diagnosed – is good for them and good for me. It helps me work out my own issues. [Editor’s note: Seretti is currently mentoring three people, but has mentored about 20 in four years.] Then I found advocacy, and it was all over! At first I thought, ‘I can’t do this.’ But then I did it.
 
NPF: What’s your favorite part of advocacy?
 
Seretti: Talking to legislators. Last summer, I visited my state legislators while they were in my district and talked to them about psoriatic disease and the issues our community faces. One of my representatives said to me, “Nobody’s ever talked to us about this before.” He listened. He wanted to hear me. He asked, “What do you want to see? What can I do for you?”
 
I should tell you that when I first began volunteering, I wrote about it on Facebook, and I started hearing from people I knew in middle school. They had psoriasis but had never spoken about it. It’s a secret for people who have it. It’s embarrassing. It’s stigmatizing. It makes you feel crappy. Well, I started talking with these people, and some of them began volunteering.
 
My goal now is to make someone else’s road easier.
 
NPF: What advice would you give someone who wants to volunteer but is hesitating over that first step?
 
Seretti: Here’s my advice:
  1. Do it.
  2. Don’t be afraid.
  3. You can help other people, and helping other people will help you.
Get Involved!
 
Don’t forget to nominate your favorite volunteer for the 2020 Outstanding Volunteer Leader award!
 
NPF President and CEO Randy Beranek speaks to the vital role of volunteers in NPF’s success.
 

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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