PWSA | USA

PWS United

Business EN ↓ 101 episodes

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.

Author

PWSA | USA

Episodes

Ep51 ADA History and Advocacy 29.07.2025 55:53

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 briefl...

Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf Gimmes 22.07.2025 27:11

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...

Ep 49: Endocrine in Teens and Adults: Conference Session 15.07.2025 56:31

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 discus...

Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement Letter 08.07.2025 48:30

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 o...

Ep 47: Nutrition Recommendations for PWS: Conference Session 01.07.2025 56:31

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 i...

Ep46: Pioneers in PWS Series - The Parent Mentoring Program 17.06.2025 28:26

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 deter...

Ep45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, Livestream 10.06.2025 32:10

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 2025ClinicalScient...

Ep 44: PWSA, IPWSO, FPWR: United in Hope 03.06.2025 23:24

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...

Ep43: All Things Conference 27.05.2025 37:34

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 ar...

Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner 20.05.2025 27:23

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 50...

Ep41: PWS Origin Stories, Success, and Awareness 13.05.2025 47:10

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 fu...

Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary 06.05.2025 41:15

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...

Ep39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics 29.04.2025 22:44

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 t...

Ep38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security Webinar 22.04.2025 45:02

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 PW...

Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1s 15.04.2025 29:38

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...

Ep36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling Guide 08.04.2025 32:51

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Please remember to leave a rating and a review. PWSA | USA’s Annual Report: Online Flipbook United in Hope Conference Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pws...

Ep35: PWS and Sibling Support 01.04.2025 45:16

On the podcast today is our beloved Parent Support Coordinator Kristi Rickenbach, along with Board members Denise Servais and Lisa Lamb, and Marketing and Communications Coordinator, Anne Fricke. They are all parents of multiple children, including a child with Prader-Willi syndrome. In their conversation, they discussed feelings of getting it wrong - of over-managing social situations and lives,...

Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide 25.03.2025 38:43

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Awareness Topics Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA 2025 DD Awareness Month: We’re Here All Year! – NACDD Women in PWS: Moving Forward Together - Prader-Willi Syndrome Association | USA What is...

Ep33: Special Education and the Department of Ed. 18.03.2025 42:58

PWSA | USA’s CEO Stacy Ward sat down with educator and IEP coach, Jamilah Bashir to discuss special education and the state of the Department of Education. They discussed training for special education teachers, the voucher program, where to find good information about changing policies and decisions within the Department of Education, and the path of an executive order. Jamilah clarified the diff...

Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications 11.03.2025 45:39

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events United in Hope Conference Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - P...

Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch 04.03.2025 1:32:11

On today's episode, we’re diving into the power of peer-to-peer fundraising through PWS Hope United—PWSA | USA’s platform that lets community members create fundraisers that fit their passion and comfort level. From simple online fundraisers to large-scale in-person events, PWS Hope United provides opportunities for anyone to raise critical funds that support our family services, advocacy efforts,...

Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action 25.02.2025 38:22

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events Rare Disease Day Rare Disease Day Hub: PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Live Stream: Rare Disease Week - Attendee Corner Virtual Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Day 2025 – J...

Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board 18.02.2025 53:55

Introducing Pioneers in PWS, a new podcast series from PWS United in honor of 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...

Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job Announcement 11.02.2025 38:33

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems Home - 2025 United in Hope P...

Ep27: Advocacy with Terry Wilcox from Patients Rising 04.02.2025 46:55

Terry Wilcox is the co-founder and CMO of Patients Rising, the "leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare access challenges." Terry sat down with our Director of Community Engagement, Dorothea Lantz, to talk about patient advocacy on state and federal levels, t...