PWS United

PWSA | USA
  • 5.0 (19)
  • NON-PROFIT
  • UPDATED WEEKLY

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

  1. 6H AGO

    Ep84: Welcoming PWSA | USA's Equity Committee

    In this episode, we introduce PWSA | USA’s newly formed Equity Committee and some of the members. We discuss the importance of an equity committee, who’s been missing from the conversations, data, research, and services, and how involving families from marginalized communities is essential to our organization and our humanity. We talk about health equity, the different dimensions of diversity, how and why to have these difficult conversations, and how families can help support equity at home. Joining Anne Fricke, PWSA | USA's communications coordinator, for this conversation are Tracy Chin, PWS parent and RN working in community-based transitional care; Ashish Rishi, founder and CEO of Unwritten Health; Dini Rao, PWS parent, community organizer and PWSA board member; and PWSA's CEO, Stacy Ward.  Links: Solidarity and Spice: https://give.pwsausa.org/event/solidarity-and-spice/e758863 Donate to PWSA | USA’s Equity Committee. Follow the link to donate and clarify in your donation that you would like the money to go to the Equity Committee: Donate - Prader-Willi Syndrome Association | USA Implicit Bias Test: Take a Test So You Want to Talk About Race: So You Want to Talk About Race used book by Ijeoma Oluo: 9781580058827 Tracy: In terms of equity books, I highly recommend this one: "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist": Being Heumann | Personal Story & Fighting Education | Judithheumann  This isn't a book, but the documentary "Crip Camp" is really good as well!: Crip Camp | A Disability Revolution Ashish: One book I can definitely recommend is: Reigniting the Human Connection: A Pathway to Diversity, Equity, and Inclusion in Healthcare - its a really good book about how a clinic in US made themselves more inclusive.: Reigniting the Human Connection — Dr. Jennifer Mieres

    52 min

  2. MAR 10

    Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA NUTRITIONAL-PHASES.pdf Resources: Diet and Nutrition - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Swallowing in Prader-Willi Syndrome Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Prader Silly: A Night of Rare Laughs - Campaign Events from March 21, 2020 – September 12, 2020 – Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Podcast Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | PWS United Advocacy Rare Disease Advocacy in the PWS Community - Prader-Willi Syndrome Association | USA Reflections from Rare Disease Week on Capitol Hill 2026 - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Family Support We're Here: Then, Now, Always! Developmental Disabilities Awareness Month - Prader-Willi Syndrome Association | USA Play-based Assessment for Preschoolers: If you have questions, please email neurodevelopmentresearchlab@gmail.com or call 216-368-0112. Visit the website at https://caslabs.case.edu/dimitropouloslab/. Fill out the eligibility form at  PRETEND Program for Preschoolers Eligibility Form Ask Nurse Lynn: Nutrition Guidelines and a Group Home - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Aardvark Therapeutics Announces Voluntary Pause of Phase 3 HERO Trial in Prader-Willi Syndrome – Fri, 02/27/2026 - 16:05 PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Response to Anesthetic Survey: REDCap Social cognition study: If you have questions, email neurodevelopmentreasearchlab@gmail.com or call 216-368-0112. Submit interest at Assessing Play & Creativity Study - Interest Form TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today   Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    29 min

  3. MAR 3

    Ep82: Kady Sweeney: See the Potential, Savor Typical Moments

    We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. She spoke with Kady Sweeney, sister to Klara (15, living with PWS). Kady shares the memory of when she realized PWS was not a typical experience. Finding the moments to laugh and the importance of the typical moments with a loved one with PWS. Kady's mission is for people outside of the rare disease community to recognize the potential of individuals with PWS. She also shares her vision of the future for her sister and others with PWS and how she plans to be a part of it.  Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442

    33 min

  4. FEB 24

    Ep81 Pulse 141: Caregivers Day, Voices on Vykat, Board Member Spotlights

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header National Caregivers Day: The Real Job Description - Prader-Willi Syndrome Association | USA Spotlight on PWS "Uncle Dan" Helping to Feed the Community - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers PWS Community Day Registration (North Carolina) Survey Donate to Mermaid Marathon PWSA Fundraising Pages - Campaign Podcast Ep80: What's in Store for PWSA | USA in 2026? | PWS United Advocacy Underserved People in the PWS Community: Who Are They and How Can We Help? - Prader-Willi Syndrome Association | USA Home | Colors Of Hope Family Support Why It Matters to Belong and It’s Important to Matter - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Recovery and Weight Loss After Surgery - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research HERO Trial Webinar: Webinar Registration - Zoom TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today Announcements PWSA | USA Board of Directors Member Spotlight: Jeffrey Covington - Prader-Willi Syndrome Association | USA PWSA | USA Board of Directors Member Spotlight: Dini Rao - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    1 hr

  5. FEB 17

    Ep80: What's in Store for PWSA | USA in 2026?

    In this New Year kickoff episode of PWS United, we're sharing an inside look at what’s in store for PWSA | USA in 2026. After reflecting on the organization’s momentum coming out of its 50th Anniversary year, our podcast co-host Carrie interviews several staff members to ask one simple question: What are you most excited about working on this year? Listeners will hear highlights about upcoming programs, expanding resources, social media initiatives, community events, and the passion fueling the work ahead. This episode offers a preview of the plans, priorities, and people dedicated to supporting individuals with Prader-Willi syndrome and their families in the year to come.   Episode Links: Adults with PWS Advisory Board webpage PWS Spanish Support Group: PWSA | USA Apoyo en Espaol 2026 Residential Providers Conference 2026 Moms' Retreat 2026 D.C. Fly-In PWS Rare Aware Art Share - Submissions due by March 15th! PWS Hope United Peer-to-Peer Fundraising Contact us if you're interested in hosting an event in 2026: hopeunited@pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442 Other Music: Purple Planet Music | Moment of Inspiration

    25 min

  6. FEB 10

    Ep79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header Residential Providers Conference - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS Rare Disease Day-15 Ways to Raise Awareness Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Plunge for PWS - Campaign Email Anne at africke@pwsausa.org to be challenged. Family Zoo Day - Miami | Prader-Willi Florida Association PWSA | USA EVENTS Webpage PWSA Fundraising Pages - Campaign Podcast Ep78: Miriam Chernick: Educating the Community | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy Congress Passes Five-Year Reauthorization of the Rare Pediatric Disease PRV Program! - Prader-Willi Syndrome Association | USA Official Super Bowl 60 Game Program PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA PWA of PA Member Questionnaire Family Support Nasogastric and Gastric Feeding Tubes: What, Why, and When They Are Needed - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Behavior and Medications for Adults - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Home - Global Prader-Willi Syndrome Registry Announcements/Resource Spotlight Stephanie Elizabeth Pircher Obituary (2026) - Windsor, MO - Hadley Funeral Home - Windsor   Intro Music: https://www.bensound.com/  License certificate #2242442    Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    36 min

  7. FEB 3

    Ep78: Miriam Chernick: Educating the Community

    We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that has changed over the years, deciding when to speak up for him and when to let him speak up for himself, her concerns for his aging, and how she sees sibling advocacy as educating the community. She also talks briefly about her book, The Zuzu Secret. The Zuzu Secret "told in alternating points of view, is about Josie, a 12-year-old aspiring veterinarian, and Abe, her 15-year-old baseball-loving brother born with a rare disease called Prader-Willi syndrome, as they learn the risks of keeping secrets and the value of family while staying true to their dreams." Use the link to learn more and purchase your copy of The Zuzu Secret: The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator

    35 min

  8. JAN 27

    Ep77: Limits, Perspective, and Mental Wellness

    This episode focuses on mental wellness, with guest Denise Rickenbach MA LMFT LADC. Denise is an Adlerian-trained Licensed Marriage and Family therapist as well as a Licensed Alcohol and Drug Counselor (LADC). Denise’s interests include addiction, codependency, family systems, anxiety, depression, obsessive compulsive disorder, grief, life transitions, and strained relationships. She was a speaker at the 2025 United in Hope conference and is the sister of PWSA | USA's beloved family support coordinator – Kristi Rickenbach. Kristi and Denise both joined Carrie and Anne on this episode on mental wellness to talk about what addictive behavior may look like and why parents of individuals with disabilities are perhaps more likely to develop these. They also discuss caregiver burden, setting limits – why and how, negative comparison vs perspective taking, disenfranchised grief, and more. Links to resources mentioned in the podcast: Caregiver Burden and Alcohol Use in a Community Sample - PMC The Michelle Chalfant Show — Life from the Adult Chair - Podcast - Apple Podcasts The Anxious Generation — from a book to a movement Addiction Expert, Speaker and Best-selling Author Dr. Gabor Maté

    57 min
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About

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

Information

  • Creator
    PWSA | USA
  • Years Active
    2024 - 2026
  • Episodes
    85
  • Rating
    Clean
  • Copyright
    © Copyright 2024 All rights reserved.
  • Show Website
    PWS United