Ep. 274 "Finding Connections Made Us Stronger with the National Psoriasis Foundation"

After being diagnosed with psoriasis and psoriatic arthritis, finding a community that understood how life changed meant everything to Jody Quinn, Ben and Kathryn Rifenbark.          Join host Alan Simmons as he addresses life with psoriasis and psoriatic arthritis before and after finding the National Psoriasis Foundation with 3 amazing volunteers – Jody Quinn, Ben and Kathryn Rifenbark. Hear their story from struggles with initial diagnosis, being an advocate for their own health care, to how they chose to become part of a community and help others with the disease to support the mission of the National Psoriasis Foundation. Being part of NPF truly changed their lives!  This episode features how 3 volunteers changed their lives to navigate the challenges of being diagnosed with psoriatic disease to taking steps to help others in need and the mission of the National Psoriasis Foundation.   Timestamps: ·       (0:00)          Intro to Psoriasis Uncovered & guest welcome Jody Quinn, Ben and Kathryn Rifenbark. ·       (0:59)          What life was like for Ben and Kathryn from diagnosis to finding a community through NPF. ·       (2:42)          Facing psoriatic arthritis first and being undiagnosed for years was challenging for Jody. ·       (4:48)          Finding control over psoriatic disease by becoming an advocate for change. ·       (6:15)          Diving into the deep end to help fundraising efforts. ·       (7:03)          Becoming a One to One mentor to help answer questions from others and share the positive impact NPF makes in                       our lives. ·       (8:52)          Making connections to help raise awareness about psoriatic disease from resolutions to public service                             announcements and lighting bridges in NPF's colors -- orange and blue.  ·       (10:40)        Receiving the NPF Volunteer Innovator award and being a Psoriatic Ambassador Honoree. ·       (12:04)        Benefits we received from attending the IMPACT Summit Volunteer Leadership Conference. ·       (15:11)        Jody's single most life-changing event was attending the FDA Drug Development meeting. ·       (17:23)        It's important to advocate for your own health care needs while continuing to learn from others and resources                            available through the NPF. ·       (19:14)        Every step no matter how small or large makes an impact and is important. Key Takeaways: ·       Being diagnosed with psoriasis and psoriatic arthritis is a life-long journey which can be made easier by finding the right health care, education and resources, as well as a community that understands what it means to live with psoriatic disease. You are not alone.   ·       You can take control over your disease by advocating for policy changes that affect all patients regardless of what chronic disease they may have. Let your voice be heard.   ·        Every step you take no matter how small or large makes a difference – whether it's learning more about psoriatic disease, sharing your story, or participating as a volunteer. You can make an impact. Start your journey with NPF today! Become a volunteer. Guest Bios: Jody Quinn has a long history of involvement with NPF as a volunteer. She first became a volunteer in 2012 after seeking to connect with others who have psoriatic disease during a Walk event. She remembers meeting an inspirational group of volunteers. Wanting to learn more about her disease she attended More Than Skin Deep and Be Joint Smart events and served as a moderator. Continuing her path of involvement she attended Volunteer Conferences in Chicago and San Francisco. In 2016 she attended her first Capitol Hill Day followed by the FDA Patient Focused Drug Development (PFDD) meeting. Her involvement was so profound she remains an active advocate promoting research and legislation to enhance access to treatments and health care services. Jody has been so successful in promoting awareness about psoriatic disease, she was awarded the NPF Volunteer Innovator Award in 2017. In 2025 she was also named as the New England Soiree Psoriatic Ambassador Honoree for her impactful service and tireless advocacy. In her words, "I volunteer because it gives me some control over what often feels like a completely uncontrollable disease. It allows me to have a say in what is happening with my life and my disease, which I didn't have before. I also volunteer so that others don't have to go through the same long and difficult journey to diagnosis and treatment that I did." Kathryn & Ben Rifenbark discovered the NPF after many challenges with finding the right diagnosis for Ben's psoriasis.  Through a local NPF Take ACTION event Ben quickly learned he wasn't alone in living with his disease, while Mom, Kathryn, gained as much information as she could. After the event, they soon became part of the NPF community with Ben serving as the 2024 Take ACTION Ambassador and a leading peer-to-peer fundraiser. He shared his story and a motivational message at last year's Take ACTION event to help encourage others to support the mission of the NPF. Ben is also an IMPACT Ambassador learning how to advocate for himself and has participated in the IMPACT Summit representing the amazing youth who are part of our NPF Community. Kathryn is now a mentor sharing what she's learned with other parents. Resources:   Volunteer Spotlight: Jody Quinn May 1, 2025 Ambassador, Advocate and Mentor Advance Online December 11, 2025.  (Ben & Kathryn Rifenbark) Her Nails Held the Secret to Her PsA  Advance Online Updated September 29, 2025.