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PODCAST

PWS United

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

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All Episodes

49:25

Ep89 Pulse 145: PWS Awareness Month, DC Fly-In,...

PWS United ·

2026/04/21

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life - Prader-Willi Syndrome Association | USA Occupational Therapy, Parent Perspective - Prader-Willi Syndrome Association | USA Spotlight on PWS Diving in to Volunteering - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association |

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42:23

Ep88: What is a Rare Pharmacy? How PWS Families...

PWS United ·

2026/04/14

One year ago, on March 26, 2025, the PWS community reached a landmark milestone with the FDA approval of VYKAT XR - the first-ever treatment for hyperphagia in PWS. But what happens after approval? How do families actually access the therapy? In this episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to answer exactly that. PANTHERx is the distributing pharmacy for VYKAT XR, and their approach goes far

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25:44

Ep87: Pulse 144: Conference Scholarships, Sibling...

PWS United ·

2026/04/07

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Understanding Prader Willi Syndrome & Autism Events | Fundraisers PWS Roadshow: Events | PWSA-OR-WA.ORG PWS Community Day Registration (Miami)

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58:05

Ep86: Homeschooling, The Ins and Outs of Educational...

PWS United ·

2026/03/31

Our guest today, Julie Casey, mom to Ryan (22, living with PWS), shares her knowledge and experience from homeschooling. The intention of this episode is to shed light on the topic and personal experience of homeschooling with PWS. We offer information so that families in our community, of all configurations (and Julie gets into that), can make informed choices about how their children with PWS are educated. We discuss how to decide if homeschooling is the right decision, or something you’d like to

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39:50

Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices...

PWS United ·

2026/03/24

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Spotlight on PWS PWSA | USA Rare Aware Art Share: Theme #1 Gallery PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Swallowing in Prader-Willi Syndrome Events | Fundraisers Solidarity & Spice - Campaign You're Invited to Solidarity & Spice: A Message from Dini

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51:32

Ep84: Welcoming PWSA | USA's Equity Committee

PWS United ·

2026/03/17

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

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29:21

Ep83 Pulse 142: Nutrition, Rare Disease Week,...

PWS United ·

2026/03/10

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

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33:12

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

PWS United ·

2026/03/03

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

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60:12

Ep81 Pulse 141: Caregivers Day, Voices on Vykat,...

PWS United ·

2026/02/24

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 -

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25:24

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

PWS United ·

2026/02/17

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

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35:40

Ep79: Pulse 140: Residential Providers, Plunge for...

PWS United ·

2026/02/10

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

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35:15

Ep78: Miriam Chernick: Educating the Community

PWS United ·

2026/02/03

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

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56:40

Ep77: Limits, Perspective, and Mental Wellness

PWS United ·

2026/01/27

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

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49:01

Ep76 Pulse 139: Art Share Launch, Social Media Use,...

PWS United ·

2026/01/21

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Rare Aware Art Share Rare Aware Art Share Back for 2026: PWS Advocacy and Awareness - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Clint Hurdle Hot Stove Dinner Hub - Prader-Willi Syndrome Association | USA PWSA | USA

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66:24

Ep75: Global PWS Registry 2.0

PWS United ·

2026/01/13

The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community. Stacy

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25:35

Ep74: Pulse138: DC Fly In Applications, Mental...

PWS United ·

2026/01/06

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Events | Fundraisers D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA 2026 Residential Providers Conference - Prader-Willi Syndrome Association | USA 2026 Moms' Retreat - Prader-Willi Syndrome Association | USA 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on PWS Share Your

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10:50

Ep73: Stacy's End of Year Message

PWS United ·

2025/12/30

2025 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research.This episode is a message from PWSA | USA CEO Stacy Ward about the incredible work done by PWSA | USA staff, volunteers, and supporters throughout this past year, along with our deep and heartfelt gratitude. Intro Music: https://www.bensound.com/ License certificate

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35:02

Ep72 Pulse 137: End of Year Reflection, Holiday...

PWS United ·

2025/12/23

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action - YouTube PWSA Memory PWSA Library - Prader-Willi Syndrome Association | USA Events | Fundraisers Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida Inicio - Asociación del Síndrome de Prader-Willi | Florida A Bow for Áine Mirella: A Night of Music,

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22:33

Ep71: Christian Garzia: Humor, Fairness, and Protection

PWS United ·

2025/12/16

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. Dorothea spoke with 15-year-old Christian Garzia, the younger brother of Rocco, a

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28:27

Ep70 Pulse 136: In Memory of Fausta, Give Kids a...

PWS United ·

2025/12/09

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action: Carol's Story PWSA Memory 1997_Vol-XXII-N4-Sept-1997.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events |

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