PWS United

PWSA | USA
  • 5.0 (20)
  • 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. Oct 14

    Physical Therapy Fundamentals for PWS

    We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbee spoke in depth about the early years of Prader-Willi syndrome, hypotonia, and how physical therapy is a critical treatment. With over 30 years of experience, Janice was able to talk about physical therapy with PWS then and now, along with the truly beneficial addition of growth hormone. Abigail shares some of the newer strategies like dynamic movement intervention and Theratog suits. Both ladies offer an array of exercises and activities, along with stressing the importance of trunk support and physical therapy involving daily interactions and activities. This episode is an informative look at physical therapy throughout the PWS journey and full of practical activities families can, and should, do at home.  Learn more about PWS and physical therapy:  Therapeutic-interventions-1-1.pdf - Booklet by Janice Agarwal Physical Therapy: The Basics - Prader-Willi Syndrome Association | USA BIOS Janice Agarwal, PT, cNDT, is the Co-Founder & Executive Director of Watch Us Farm. She is also a pediatric physical therapist with 40 years of experience. Janice led the Neurodevelopment Evaluation Team at Boston City Hospital and the Early Intervention Team at St. Mary’s Hospital for Children in New York and earned her Pediatric NeuroDevelopmental Training certification at the Bobath Center in London, England.  Janice creates Behavioral and Sensory Integration plans for individuals and families nationally and internationally. She also has an adult son, Alex, with PWS. Abigail Ogilbee holds a Doctorate of Physical Therapy degree with over 13 years of experience in pediatric physical therapy, focusing on children 0-5 years. She is certified in intermediate level DMI (Dynamic Movement Intervention), Theratog fittings, and electrical stimulation for infants and toddlers. Abigail now owns and operates Mat-Su Pediatric Physical Therapy in Wasilla Alaska.

  2. Sep 29

    Ep108: Newborn Screening and Florida's Sunshine Genetics Act

    Representative Adam Anderson joined the podcast to discuss newborn screening and the Florida Sunshine Genetics Act, Florida’s innovative voluntary research program using whole-genome sequencing as an additional newborn screening tool. The program, developed in collaboration with the Florida Institute for Pediatric Rare Diseases at Florida State University and other leading research and medical institutions, offers eligible Florida families the opportunity to screen their newborns for approximately 900 childhood-onset genetic conditions—many of which may benefit from earlier identification, intervention, monitoring, or treatment.   Our Director of Community Engagement, Dorothea Lantz, who serves as Chair of the Sunshine Genetics Community Advisory Board and was involved as a rare disease advocate during the development of the Sunshine Genetics Act, spoke with Rep. Anderson about the personal story that led him into rare disease advocacy, the path from legislation to the creation of Sunshine Genetics and the Florida Institute for Pediatric Rare Diseases, and Florida’s growing investment in pediatric precision medicine. Their conversation explored the potential of genomic newborn screening to shorten the diagnostic journey for families, the importance of connecting families and pediatricians with genetic counselors and rare disease expertise, and how earlier identification of genetic conditions can help families access appropriate care and make more informed decisions about their child’s health.   Intro Music: https://www.bensound.com/  License certificate #2242442

  3. Sep 15

    Ep107: Belonging, Intimacy, and Sexual Health with PWS

    Successful and effective conversations on sexual health include discussions on intimacy, belonging, safety, friendships, consent, and so much more. These conversations may feel intimidating for parents and caregivers. We may not know how to begin, but evidence shows that these conversations are critical to helping keep our loved ones safe from sexual exploitation (especially our loved ones with Prader-Willi syndrome), while also helping them develop a framework for understanding and participating in healthy relationships with the level of intimacy they may desire. So how do we begin? PWSA | USA CEO, Stacy Ward, sat down with Patrice Carroll, LICSW, Director of PWS Services at Latham Centers, and Lynn Garrick, Medical and Research Coordinator at PWSA | USA to offer guidance on navigating the topic of sexual health, the importance of consent, not just as a receiver but as a listener, experiencing rejection and disappointment, the use of social media, how belonging is a part of overall health, and ultimately, how does this affect quality of life. Read Stacy's recent article on this subject at "Every Body": Sexual Health Belongs to Everyone - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/  License certificate #2242442

  4. Sep 1

    Ep106: Behavior, Advocacy, Siblings: Celebrating 2 Years of Podcasting

    PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode is a look back at the previous year of episodes (check out EP56: Celebrating One Year of Podcasting | PWS United for a look at the first year of episodes). From sibling advocacy, a personal look at single caregiving, and advice from PWS dads, to behavior and cognitive functioning, PWS research, rare pharmacies, and the inspiring world of PWS advocacy, this episode highlights the incredible work of families, caregivers, professionals, volunteers, and staff in seeking to improve the lives of and empower those living with Prader-Willi syndrome.  Links to episodes highlighted: Ep60: Rockie Penta: Caregiver, Roommate, Best Friend | PWS United Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success | PWS United Ep67: Broken Systems, Enduring Love, Single Caregivers Series | PWS United Ep75: Global PWS Registry 2.0 | PWS United Ep84: Welcoming PWSA | USA's Equity Committee | PWS United Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues | PWS United Ep94 Advocacy is Everything: 2026 DC Fly-In Recap | PWS United Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United Ep101: Transitioning PWS to Adulthood | PWS United

  5. Aug 26

    Ep105: Spreading Love: The Life and Legacy of Karen and Her Family

    PWSA | USA's Director of Community Development, Melanie Zalman, sat down with caregiver Shelley Smith to shine a light on the lasting impact of thoughtful planning, enduring love, and the legacy that one family can leave behind. We came to know Shelley through her role as caregiver to her cousin Karen (with PWS) who passed away in December of last year at the age of 68.  We have begun to learn a story that spans decades of devotion, caregiving, advocacy, and planning by Karen's mom and dad, her extended family, and those who loved her the most. In this conversation, Shelley reflects on Karen's life, the commitment family made to ensuring she was cared for throughout her lifetime, and the legacy gift that will help support future generations of individuals with PWS and the people who love and care for them.  Resource Links: Planned Giving | PWSA USA Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA

  6. Aug 18

    Ep104: Leave a Lasting Legacy with PWSA | USA (Episode Re-Air)

    This episode is a re-air from August of 2025 on the topic of planned giving and leaving a lasting legacy with PWSA. August is Make-a-Will Month, and we have some new resources, like our legacy tips, on the how and why of supporting the work of PWSA | USA through the avenue of planned giving. Thank you again to Tim Hearn, father to David (living with PWS) for an insightful and inspiring conversation on leaving a lasting legacy. Planned Giving | PWSA USA Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/  License certificate #2242442

  7. Aug 4

    Ep103: PWS Roadshow: Building Community, One Stop at a Time

    The PWS Roadshow is a series of events throughout the Pacific Northwest, put on by the Washington/Oregon chapter of PWSA and sponsored by Soleno Therapeutics, the makers of VYKAT XR, the only FDA-approved treatment for hyperphagia.  It is an opportunity to meet local PWS families, ask experts and connect with PWS professionals in the area, learn about new and potential treatments for hyperphagia, and connect with Soleno PACE for product support and resources. As Vonnie Sheadel, chapter president, host of the PWS roadshow, and mom to Bill (46, living with PWS) wrote: “Because PWS is rare, families frequently face isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards—including connecting with individuals and families who may have been missed by traditional outreach in the past.” In this episode you’ll hear from Vonnie herself, Cainan (adult living with PWS), and his mom Heather, PWS parents Joseph and Erin, and PWS United's co-host Anne and her daughter Freya (living with PWS), all talking about the Medford PWS Roadshow, along with the value and importance of creating and attending events like these. PWS Link Map | Mysite Events | PWSA-OR-WA.ORG   Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com

  8. Jul 21

    Ep102 Pulse 151: Disability Pride, Podcast Changes, Voices on VYKAT 6

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Join our Newsletter - Prader-Willi Syndrome Association | USA Pulse Header The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA What Does Disability Pride Month Mean to Me? - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Medical-Reference-Guide-for-Parents-Rebranded-2022.pdf Events | Fundraisers Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign Residential Providers Conference - Prader-Willi Syndrome Association | USA PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey PWSA Events Podcast Ep101: Transitioning PWS to Adulthood | PWS United Advocacy Meet Our Equity Committee: Ashish Rishi - Prader-Willi Syndrome Association | USA Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA Family Support Why We Gather - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Deconditioning After Hospital Stay - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx PWS Clinician Information Collection Form - 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.

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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
    110
  • Rating
    Clean
  • Copyright
    © Copyright 2024 All rights reserved.
  • Show Website
    PWS United