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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

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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40:44

Ep69: Joe Gill: Inclusion, Purpose, and the Little...

PWS United ·

2025/12/02

Welcome to another episode in our podcast series, Sibling Advocacy, where we speak with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. Today's episode, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, an almost 20-year-old living with PWS. Joe talks about growing up with

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60:28

Ep68 Pulse 135: Holiday Preparation, Prader Silly...

PWS United ·

2025/11/25

The latest in PWSA | USA events and PWS news in advocacy, family support, and research.24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays. Preparing for the Holidays Blogs/Resources: Celebrate Thanksgiving Safely Tips and Techniques for a Safe Holiday Season Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs A Letter to Friends and Family PWSA Memory: September 1997 edition of The Gathered View Spotlight on Hope: Share your submission! 2025 Angel

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55:08

Ep67: Broken Systems, Enduring Love, Single...

PWS United ·

2025/11/18

Carrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS.This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is an important and beautiful episode, for its rawness, the vulnerability

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36:21

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday...

PWS United ·

2025/11/11

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 Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy PWSA Memory 1993_Vol-XVII-N5-Sept-Oct-1993.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause - Campaign PWSA Fundraising Pages -

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45:06

Ep65: Grit, Grace, and Family, Single Caregivers Series

PWS United ·

2025/11/04

On today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care for your loved one so you may find a piece of yourself again, or

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33:19

Ep64: Henry McDonald: Dynamic Duo, Superhero

PWS United ·

2025/10/28

The next episode in our podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. Today's episode, led by Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS). Henry is an insightful 14-year-old who refers to him and his sister as the

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36:45

Ep63: Nile Hope Workshop and Camp, Department of...

PWS United ·

2025/10/21

Ep63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live AuctionThe latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Prader-Silly Live Auction Prader Silly: A Night of Rare Laughs PWSA Memory 2001_Vol-26-N5.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Golf | The RMC Foundation PWSA Fundraising Pages - Campaign Spotlight on

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