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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

23:15

EP55: Hope, Perseverance, and Soleno's Path to an...

PWS United ·

2025/08/26

How does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment? On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi

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28:01

Ep55 (Bonus Episode!): Leave a Lasting Legacy with...

PWS United ·

2025/08/21

August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community.Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s

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29:14

EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare...

PWS United ·

2025/08/19

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Planned Giving Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA Planned Giving | PWSA USA PWSA Memory Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Journey of Hope Gala Honoree Spotlight: Dr. Dan

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57:16

Ep53: Empowering Families with Dr. Destiny Pacha,...

PWS United ·

2025/08/12

On today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her discussion time with caregivers. She created a form for people to

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36:13

Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win,...

PWS United ·

2025/08/05

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Make-A-Will Month Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA Planned Giving | PWSA USA PWSA Memory PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - Prader-Willi Syndrome Association | USA Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome

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55:53

Ep51 ADA History and Advocacy

PWS United ·

2025/07/29

On this week’s episode of PWS United, we celebrate the 35th Anniversary of the signing of the Americans with Disabilities Act (ADA). The ADA has been monumental in protecting individuals with disabilities from anti-discrimination legislation and ensuring the legal rights of individuals with disabilities to live, work, and receive services in our society. In our discussion of the ADA, we dip briefly into the history of the modern disability rights movement that led up to the signing of the ADA, from

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27:11

Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS...

PWS United ·

2025/07/22

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 50th Anniversary PWSA Memory: Volume33-Number4.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign 2025 United in Hope International PWS Conference Recap-General 2025 United in Hope International PWS Conference Video Fundraisers No Gimmes for Jimmy - Campaign PWSA

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56:31

Ep 49: Endocrine in Teens and Adults: Conference Session

PWS United ·

2025/07/15

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of growth hormone therapy in those who have completed their growth,

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48:30

Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book,...

PWS United ·

2025/07/08

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 United in Hope Conference United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference 2025 United in Hope International PWS Conference - YouTube PWSA | USA 50th Birthday Party Drone Show Submit conference testimonials to africke@pwsausa.org or communications@pwsausa.org 50th Anniversary PWSA Memory: 1975-_-Vol-I-N1-July-1975.pdf Share your PWSA

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56:31

Ep 47: Nutrition Recommendations for PWS: Conference...

PWS United ·

2025/07/01

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role. Nutrition Slides from Michael Tan's session:

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28:26

Ep46: Pioneers in PWS Series - The Parent Mentoring...

PWS United ·

2025/06/17

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

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32:10

Ep45 Pulse 124: Scoliosis Awareness, Conference App,...

PWS United ·

2025/06/10

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Scoliosis Awareness - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference How-to-Download-the-2025-United-in-Hope-PWS-Conference-Mobile-App.pdf 2025 United in Hope Welcome Packet 2025Family-Agenda-2.pdf 2025ClinicalScientific-Agenda.pdf 2025ProfessionalProviders-Agenda.pdf 2025Adults-with-PWS-Agenda.pdf 50th

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23:24

Ep 44: PWSA, IPWSO, FPWR: United in Hope

PWS United ·

2025/06/03

On June 24-28 families and providers in the PWS community from around the world will be gathering in Phoenix, AZ for the 2025 United in Hope International PWS Conference. This is the first ever joint conference between PWSA | USA, FPWR and IPWSO, which symbolizes a historic milestone in the PWS community This groundbreaking event will shape the future of PWS research and care.In this episode, we have a conversation between the three organization heads, Susan Hedstrom, Marguerite Hughes, and of

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37:34

Ep43: All Things Conference

PWS United ·

2025/05/27

PWS United hosts Carrie Ilijevich and Anne Fricke sat down with Kristi Rickenbach, PWSA | USA Parent Support Coordinator and frequent guest on the podcast, and the woman behind so much of the intricate and incredible planning, PWSA | USA’s Events Coordinator, Angela Frazier, for a conversation about all things conference. They covered many topics including the mobile app for conference, getting around the grounds and the venue, food availability and meal planning, staying cool in the Arizona heat,

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27:23

Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults...

PWS United ·

2025/05/20

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference Clinical and Scientific Program High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf Share your PWSA Memory: 50 Year Anniversary -

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47:10

Ep41: PWS Origin Stories, Success, and Awareness

PWS United ·

2025/05/13

PWSA | USA staff members Sarah Kasaby, Melanie Zalman, Charles Conway, Elaine Towle, and Kristi Rickenbach, are parents of loved ones with PWS. On this episode of PWS United, they share their PWS origin stories, how things have changed since the early days of their PWS journey, and their favorite ways to spread PWS awareness. Honesty, wisdom, support, pride in their loved ones, and hope for the future permeate this episode - an inspiring way to celebrate PWS Awareness Month for all of May, focusing

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41:15

Ep40 Pulse 122: PWS Awareness Month, Family...

PWS United ·

2025/05/06

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: PWSA-Pulse-May-2021.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association |

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22:44

Ep39 Unlocking a New Path to Treat Hyperphagia in...

PWS United ·

2025/04/29

In this episode of PWS United, we explore the science and hope behind Aardvark Therapeutics’ ARD-101, an investigational treatment currently in its Phase 3 clinical trial for Prader-Willi syndrome. Our guests, Dr. Tien Lee, CEO of Aardvark Therapeutics, and Dr. Manasi Jaiman, Chief Medical Officer, break down the difference between hunger and appetite, and how ARD-101 targets gut-brain signaling to reduce hyperphagia.Dr. Lee and Dr. Jaiman also share insights into Aardvark’s uniquely compassionate

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45:02

Ep38 Pulse 121: Occupational Therapy Month,...

PWS United ·

2025/04/22

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. VYKAT XR Town Hall: Meeting Registration - Zoom United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary PWSA Memory: 1976_Vol-II-N1-Jan-1976.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi

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29:38

Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking,...

PWS United ·

2025/04/15

On this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator and the woman behind Ask Nurse Lynn. We pulled three previous submissions to discuss on this episode, based on some common questions that families in the PWS community have. Nurse Lynn discussed when and why to start growth hormone, tips for helping your loved one with skin-picking issues, and what are GLP-1s and why they may or may not work on individuals with PWS. Our Ask Nurse Lynn library is growing by the

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76 results

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