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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

32:51

Ep36 Pulse 120: Annual Report, VYKAT XR Webinar,...

PWS United ·

2025/04/08

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@pwsausa.org 50th Anniversary PWSA Memory: Pioneering geneticist Merlin G. Butler, M.D., Ph.D., keeps

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45:16

Ep35: PWS and Sibling Support

PWS United ·

2025/04/01

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, letting siblings take on perhaps too much responsibility, over-compensating for the challenges of PWS

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38:43

Ep34 Pulse 119: Awareness, Staying Cool at...

PWS United ·

2025/03/25

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 neurodiversity? - Harvard Health Neurodiversity and Prader-Willi Syndrome - Prader-Willi Syndrome

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42:58

Ep33: Special Education and the Department of Ed.

PWS United ·

2025/03/18

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 different roles of the U.S. Dept. of Ed. versus the state’s Dept. of Ed., focusing on funding and the

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45:39

Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner,...

PWS United ·

2025/03/11

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 - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities:

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01:32:11

Ep31 PWS Awareness Starts Here: Fundraising with Hope...

PWS United ·

2025/03/04

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, and groundbreaking research for PWS. This episode features interviews with members of PWSA | USA's

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38:22

Ep30 Pulse 117: Commitment to Advocacy, Rare Disease...

PWS United ·

2025/02/25

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 – Join Us! Rare Disease Week Advocacy Calls to Action: Join Rare Disease Week Advocacy from Home -

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53:55

Ep 29: Pioneers in PWS - Residential Care and the...

PWS United ·

2025/02/18

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 honor of PWSA | USA’s 50th anniversary, we’re diving into their stories. Pioneers in PWS was

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38:33

Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy...

PWS United ·

2025/02/11

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 PWS Conference For info on sponsorship opportunities: development@pwsausa.org Share your PWSA Memory: 50

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46:55

Ep27: Advocacy with Terry Wilcox from Patients Rising

PWS United ·

2025/02/04

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, the importance of rare disease groups advocating together, and tips to keep in mind when advocating with

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50:17

Ep26: Clinical Trial Perspectives Part 1

PWS United ·

2025/01/28

Justice and Kristi Rickenbach, along with Jennifer Andrews, sat down with Anne Fricke to share their experiences and perspectives on participating in Harmony Biosciences' pitolisant clinical trial. Pitolisant is being tested for its efficacy in treating excessive daytime sleepiness in individuals with PWS. They discuss what brought them to this particular trial, details and logistics, the importance of participating in a clinical trial and research, and life before and after enrolling. PWSA | USA

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39:00

Ep25 Pulse 115: Countdown to Conference, Hot Stove...

PWS United ·

2025/01/21

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 Home - 2025 United in Hope PWS Conference For info on sponsorship opportunities: development@pwsausa.org PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Prader-Willi Hot Stove | Powered By GiveSmart Diamonds & Denim 2025 - Campaign PWSA Fundraising Pages - Campaign Announcements/Resource

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58:55

Ep24 TREND & PWS Connect

PWS United ·

2025/01/14

This episode is an edited recording of a past webinar explaining how parents can help advance PWS research while also finding and building community support. PWS parents Maria Picone and Chris DeFelice shared how their personal journey with PWS led them to create the PWS Connect channel on Discord, a place where caregivers come together to share their journeys, experiences, questions, and advice to support each other and directly impact the progression of PWS research. This episode explains the

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31:14

Ep 23 Pulse 114: Celebrating 50 Years of Hope,...

PWS United ·

2025/01/07

Listen to the latest in PWSA events and PWS news: how to help us celebrate our 50th Birthday year in 2025 at the Journey of Hope Gala and our 50th birthday party at the International PWS conference in June, a young artist's Spotlight on Hope, call for Rare Aware Art Share submissions, Diamonds and Denim fundraiser, the upcoming PWS Advocacy master class, PWSA Egypt, Nurse Lynn's response for a late diagnosis and newborn screening, the new Journeys project on PWS Connect on Discord, call for

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34:08

Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy,...

PWS United ·

2024/12/24

In this Pulse episode, Carrie and Anne discuss the holidays, the upcoming close of Angel Drive, Stacy's message of gratitude and progress, a young marathon runner with PWS, Rare Aware Art deadline, 2025 International conference, Hot Stove save the date, Inclusive Advocacy in Action, James and Elaine Towle's "Our Stories" video, year-end highlights for advocacy, the latest PWS in Adulthood blog, an Ask Nurse Lynn question about Lorazepam, international book award for Destiny Pacha, call for abstracts

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01:55:42

Ep21 Meet the PWSA | USA Staff

PWS United ·

2024/12/17

Meet the PWSA | USA staff! In this episode, listeners get a behind-the-scenes glimpse of the dedicated staff as we answer questions about what we do for the organization, what we love about working for PWSA and the PWS community, what we think you all need to know about what we offer, where would Carrie travel to tomorrow, what skills does Anne wish she had, what is one (of many) of Dorothea's most memorable moments on Capitol Hill, and who does Stacy prefer - individuals with PWS or their parents

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36:27

Ep20 Pulse 112: Angel Drive, Georgia Advocacy, Growth...

PWS United ·

2024/12/10

The latest in PWSA | USA events and PWS news. LINKS Donate: Angel Drive 2024 - Prader-Willi Syndrome Association | USA PWSA | USA Hope in Action: Grandparents’ Stories of Love and Resilience Share your Spotlight on Hope: Share Your Story - Prader-Willi Syndrome Association | USA 2025 United in Hope PWS Conference Submit to the Rare Aware Art Share: PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Rare Aware Art Share Gallery: Rare Aware Art Share Portfolio 2024 - Prader-Willi

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37:15

Ep19 Caring for the Caregiver

PWS United ·

2024/12/03

As parents and caregivers, caring for ourselves is one of the most important—and one of the most often forgotten—things we can do as a caregiver. If we neglect to take care of ourselves, we may likely find that it is more challenging to care for our loved ones. When our needs are taken care of, the person we care for will benefit, too. Recognizing that we need to take of ourselves, and actually doing that, are not always synonymous. In an effort to inspire you all to care for yourselves, we put

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42:42

Ep18 National Adoption Month, Adopting a Loved One...

PWS United ·

2024/11/26

November is National Adoption Month, and we have a lovely episode with Rachel Aazzerah, the adoptive mom of Michael, a 6-year-old with PWS. She speaks with Stacy about her family’s experience in adopting Michael as a baby, what open adoption looks like, and offers advice and suggestions for how families can look into adoption for themselves. This conversation steers around to how people can support adoption causes - like donating to local foster care closets, being a respite home for infants, and

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43:45

Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain...

PWS United ·

2024/11/19

The latest in PWSA events and PWS news in research, family support, and advocacy. Get a brief introduction to International 15Q Day and how you can help support PWSA | USA for our 2024 Angel Drive fundraiser. Other topics include the 2025 International PWS conference and FPWRs travel scholarship, Rare Aware Art Share birthday theme, our Hope in Action video series, a PWS Christmas party in the Pacific Northwest, PWS conference in Texas, Dorothea Lant's new appointment on RDLA advisory committee,

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76 results

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