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June 17, 2025 28 mins

This is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating PWSA | USA's 50th Anniversary!

Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community-one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA's 50th anniversary, we're diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to explore where we've been, how far we've come, and recognize the pioneers who made it possible. 

In this episode, we look back at the foundation of our parent mentoring program, how it has evolved over the years, and the incredible women who have passed the torch of support. We hear a brief testimonial from two current parent mentors about some of their favorite experiences of being a mentor. This episode closes out with an interview with the current director of the parent mentoring program, Kristi Rickenbach. She shares with us how she got involved, what she loves about this work, and ultimately, what her goal is as a parent mentor. 

You can read the original Pioneers in PWS article at Pioneers in PWS - The Parent Mentoring Program - Prader-Willi Syndrome Association | USA

As a reminder, that there will be no new episode coming out next Tuesday. We will be at the International PWS Conference in Phoenix, AZ. Our next episode of PWS United will be a LIVESTREAM from a conference session on Saturday, June 28. Learn more about the session and how to join the livestream at How To Join a PWS United Livestream on Podbean - Prader-Willi Syndrome Association | USA

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