'Finding Connections Made Us Stronger with the National Psoriasis Foundation' Transcript

0:23 EPISODE INTRODUCTION by moderator Alan: My name is Alan Simmons and I'll be your moderator for today's episode highlighting 3 amazing volunteers. I'm also a volunteer with the NPF and have been involved for many year in the One to One Mentor program, and I've also been a moderator for live events and podcasts like today. Joining me for a discussion about why they volunteer for the NPF is longstanding volunteer Jody Quinn. Some of you may recognize her or know her from different events and advance articles, and more recent volunteers, Kathryn and Ben Riffenbark.

0:59 Alan: Welcome, Jody, Katherine and Ben. Thank you so much for taking your time to join me today. So for our listeners, Katherine and Ben, what was your life like before you found the NPF and how did your involvement first begin?

1:15 Kathryn: Ben was first diagnosed with psoriasis in the fall of 2022. At that time, we didn't know anyone else who had psoriasis, and we didn't know a lot about psoriasis other than what we had seen on the commercials advertising medications. We first found out about NPF when they were holding a Take Action event near us in 2023 and that was actually very close to my office and I found out about it through a newsletter that my office sends around about events in the area. We signed up not knowing what to expect, but really just wanting to find out more about the organization and get connected to other people who had psoriasis. When we showed up to the event, everyone from NPF was extremely welcoming to us. They knew who we were as soon as we walked into the event and they were able to help us get a lot more information about Ben's diagnosis and get connected to all of the resources that they had at NPF. Because we felt so welcomed there, we really thought it would be important for us to continue our involvement with NPF through volunteering and fundraising.

2:18 Ben: I wanted to fundraise before we went to the event and share my page with my family and friends.

2:24 Alan: Well, I can definitely say that whenever I went to my very first event, I felt very welcomed as well. As someone with psoriasis, (and this was a long time ago), it was a stigma of people not wanting to get close to you and not wanting to touch you. When I went to my very first event, everybody gave me a hug and that was something that was kind of foreign to me and it was just amazing. It changed my whole attitude for life. And Jody, how about you? Where did your involvement begin and what was life like for you before you found the NPF?

2:55 Jody: Well, my life was kind of crazy because I'm one of the situations where my psoriatic arthritis showed its face about 12 years before my psoriasis. So I went undiagnosed for many, many years and then even when my psoriasis started that wasn't diagnosed properly. So it took me 15 years to finally be diagnosed. And then all of a sudden you're told, well, now we know what it is. And it's one of those be careful what you wish for. I always wanted to know what was wrong and I'm told I have a chronic illness, no cure, and I'm going to have it for the rest of my life. So it was a sad day when I found out what was finally wrong with me, and a good day, because now I knew what was wrong with me. So it was a while ago. So there were no TV ads. There were no celebrities. There were no sports players that were on TV, no commercials about drugs. So it was really no one really knew anything and I certainly knew nothing about it. So as my disease progressed and it was apparent that I was going to have more than just over the counter drugs, I said, well, I have to find somebody. So I went online and did a search and that's when I found the National Psoriasis Foundation. I reached out to them online. They got back to me very quickly and put me in touch with someone in Massachusetts who was going to be doing a walk fundraiser. And I said, yeah, that's exactly what I'm looking for -- other people in Massachusetts that that have what I have. So I went to the walk and it was amazing. There were all these volunteers and patients and doctors and researchers, and they all understood everything I had. Nobody was like, oh, what do you have? And it was just amazing, you know, to be part of this group of people that understood everything I had after spending many years with people saying, I don't know what that is. So it was a wonderful experience and that was about 14 years ago. So I've been hanging around ever since.

4:48 Alan: Yeah, I can link with you there on being around for a while and I'm so glad that we all found the NPF. I also attended a walk and that's where I first got connected and I've had a lot of connections outside of just the walks. So I'm curious, after the walk, what happened after you attended your first one? I mean, I got involved very heavily with NPF. So Jody, let's start with you. What all have you done since you've joined the NPF?

5:15 Jody: So around the time of the walk, they also had a program called Be Join Smart and More Than Skin Deep so I was on panels for those events that they had in Boston. And then one day, about four years into my volunteering, they offered for me to go to Washington to do advocacy. And of course my first response was, I am not a politician. I don't know how to speak to politicians. I can't do this. And they assured me, “oh, you can do this”. And I went and it was just great to all of a sudden have some control over the disease, to actually have my voice listened to and to help make policy changes that affect all patients, not just psoriatic disease patients, but all patients. So it was just a great experience and that was about 10 years ago and I just remember on the plane riding home that day saying I'm going to be a patient advocate and the NPF gave me the training, the support, and the network to continue on with my advocacy still to this day.

6:15 Alan: That's awesome. Kathryn and Ben, So what have you done since you all joined the NPF?               

6:21 Kathryn: We have only been involved for a few years, but we've tried to dive into the deep end with our involvement. I am a one-to-one mentor to work with other parents who have recently had a diagnosis in their family, and we've also really been focusing our efforts on fundraising. Every year, Ben has a goal to surpass his fundraising goal from the prior year. We've also had the opportunity to attend two of the Impact Summits as well as the Take Action events at our local area. Ben, do you want to talk about what you've done specifically?    

6:53 Ben: I've been a Take Action Ambassador for one year. I've been fundraising for three years. And I went to two IMPACT Summits.

7:03 Alan: That's awesome. I wish whenever I was Ben's age that I had the NPF. I didn't have all of that. I was diagnosed at the age of seven. So I've had this for a really, really long time and it took me a long time to get connected to the NPF but it's been an amazing ride since I have. So Kathryn, you've chosen to become a parent one to one mentor. I'm a mentor myself. So why did you choose to become a mentor?

7:28 Kathryn: For us, it was a lot to figure out when we, when Ben first received his diagnosis, as we didn't have anyone else in our lives who had psoriasis. So I know how hard it can be for a parent to deal with that initial diagnosis, and I wanted to be someone that other parents could come to. I really value research and resources, which is why NPF has been such a positive impact in my life. And when I am working with other parents through the one to one mentor, usually they have recently had their child receive the diagnosis. They have a lot of questions about those initial stages -- how to learn more about the diagnosis, what treatment options might look like, and how to advocate for their child. So I love to point them to the variety of resources that NPF has on their website, like the podcasts, different videos, patient navigator or the healthcare directory so that they can feel equipped. As a parent, I really feel like they're our parents' biggest role is advocating for our kids to receive the best treatment options that they can. And we've really found that a lot of times doctors aren't coming forward and presenting a lot of options. You have to do the research and go to your doctor with those options that you want to pursue. And so I want to help all the parents to feel equipped to do that through the NPF and gaining some knowledge that they can be educated to advocate for their child.

8:52 Alan: Kathryn that is so admirable. I really love the fact that you've gone out there and you're sharing with everybody all of the hard work that you've done and the research. I know a lot of times, I'm not a parent, but I've talked to a lot of people that are that are in this community and just being able to have somebody that can sympathize with you and know what you're going through is a huge help. So, Jody, as part of your efforts to promote Psoriasis Awareness Month in August, you've taken local action, which is pretty amazing. Can you talk about what actions you've taken to raise awareness about psoriasis?

9:28 Jody: Along with going to Capitol Hill several times, I also visit the State House in Massachusetts when there's a particular bill that I'm interested in and/or just trying to promote awareness. And I met with my senator and we crafted a resolution that was adopted by the Massachusetts Senate declaring August Psoriatic Disease Awareness Month. And I was pretty proud of that action and while I was at the State House, a wealth of information talking to everybody that worked there, I found the connection. There's a very large bridge in Boston called the Zakim Bridge, and they lit it up orange and blue in August in honor of the National Psoriasis Foundation and Psoriasis Awareness Month. And while I was at that same event, I ran into the mayor of Boston at the time. And he agreed to light the City Hall up, also in orange and blue in awareness of psoriatic disease month. So yeah, it was pretty amazing how that sort of all fell together. And then from that I also did a public service announcement for the local cable station talking about the National Psoriasis Foundation and volunteering. 

10:40 Alan: That is awesome that the city was willing to do that for you. That takes a lot of hard work and I know a lot of things just fell in place to make that happen and that's absolutely phenomenal. That puts a smile on my face. So thank you, Jody, for your actions. Along with your other activities, you were recognized as the NPF Volunteer Innovator. You got that award in 2017, which is quite an honor. And speaking of honors, in 2025 Jody you were also named the New England Soiree Psoriatic Ambassador honoree for your impactful service and tireless advocacy. What do these awards mean to you?

11:19 Jody: First of all, I was humbled and honored when they gave me both of these awards because it's not something you know about or run for. It's just something that’s chosen by other volunteers, by staff members at the NPF. And I take great pride in all my advocacy and volunteer work. But it showed me that the NPF, the volunteers, the staff, also valued my contribution to psoriatic disease patients. So it was just a great experience. And also at these events it's another chance to promote awareness for psoriatic disease because after these events and after I speak, countless people come up to me afterwards and say I went through that too. I always thought I was the only person. So it did help spread awareness. So it was great all around.

12:04 Alan: NPF is so grateful, Jody, for all you have done over the years. Thank you. One event that you all have attended is the Impact Summit, which is NPF's leadership conference for volunteers. It's a conference where volunteers have to apply to attend. Can you all explain what was the benefit of attending the Impact Summit and how did you feel being part of that conference? Ben and Kathryn, let's start with you.

12:28 Ben: At the Impact Summit, I learned how to ask companies for sponsorships and organized fundraising events. I also got to meet other kids who have psoriasis and talk to them about what it is like for them. I left conference with lots of ideas in my head about fundraising and advocacy for myself and NPF. I would like to encourage others to go to the Impact Summit.

13:01 Kathryn: For me, it has been really wonderful to connect with a lot of families and individuals who have psoriasis. It's been a really great way for us to build our support community. We have learned so much about what it means for Ben and the future of his diagnosis. We had no idea when he was first diagnosed that all the different comorbidities and different progressions that could happen with psoriasis. So it's been very educational to learn about the challenges he might face in the future. But also learn about the resources that are out there for him, the different medication options that he could pursue, and feel really equipped to be able to prepare him for what comes in the future. A lot of the families that we connect with, their kids are now teenagers. So Ben is 11. He was diagnosed when he was 8. So they are a little bit ahead of us in their child's journey, which allows us to learn from what they've already gone through. It also gives us a great opportunity to learn so much about the work that NPF is doing either advocating for patients or the resources that they have. And like Ben was mentioning we always come away so inspired with how to increase our fundraising efforts, learn new ideas about how to spread the information about NPF in our local community.

14:13 Alan: And Jody, how about you? What was the biggest benefit for you?

14:18 Jody: There was a lot of benefits, but I think one of the best things is being with all of these volunteers that are from across the whole nation where you don't get a chance in everyday life to speak to people all these different ages and ethnicities from different parts of the country. So it's really great because everybody's input is completely different and also the NPF themselves, they provide you with resources and tools to be a better volunteer to help with fundraising, which is the goal to find a cure for psoriatic disease. So fundraising’s may not be everybody's favorite thing, but it is certainly a very, very important part of being a volunteer. And I've been doing it for a while. So events like this I love because you leave with a new sense of purpose and it re-energizes you and inspires you, and you're ready to take on the next year.