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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

58:22

Ep16 Self-Care, Self-Advocacy, and Gratitude

PWS United ·

2024/11/12

PWSA | USA's communication team, Carrie and Anne, speak with PWS mom, Emily Felt, about self-care for caregivers. We talk about what caregiver burnout may look like, various ways to practice meditative activities and why, the importance of self-advocacy and external support, what gratitude does for perspective and mental health, and how and why to keep showing up for yourself. Whether your self-care routine is a walk in the forest, yoga stretches in the morning, a campfire with friends, or all of

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46:41

Ep15 Pulse 110: Angel Drive Kick-Off, NORD Summit,...

PWS United ·

2024/11/07

The latest in PWSA events and PWS news in research, family support, and advocacy with PWSA | USA's Director of Development, Melanie McDonald, filling in for Carrie. Hear about the launch of our Angel Drive campaign and how you can donate, the latest happenings on Capitol Hill, support for PWS families affected by the recent hurricanes, PWS in adulthood blog series, upcoming family support webinars, workshops, and offerings and Family Caregiver Month, an update on one family's clinical trial journey,

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22:41

Ep14: Adults with PWS Advisory Board

PWS United ·

2024/10/29

PWSA | USA's Adults with PWS Advisory Board recently met in person at the site of the 2025 International PWS conference. Stacy Ward, CEO of PWSA, interviewed board members to share more about the work they do, how they began, what it's like living with PWS, advice for families, and what strengths they are looking for as they seek for a new member. Advisory Board members include Conor Heybach, Shawn Cooper, Abbott Philson, Kate Kane, Victor Penta, Trevor Ryan, and Brooke Fuller. Links: Virtual Art

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01:10:18

Ep13 Pulse109: Physical Therapy Month, Dominique...

PWS United ·

2024/10/22

Updates on PWSA events and fundraisers, along with the latest news in advocacy, family support, and research in the PWS community. PWSA | USA's hotline is (941) 312-0400 Links: Therapeutic-interventions-1-1.pdf Move Play Thrive | Brain and Sensory Foundations Course - Home Share Your Story - Prader-Willi Syndrome Association | USA Home - 2025 United in Hope PWS Conference PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA PWS Hope United: Dance Silly for Prader-Willi The Giving Pump

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41:33

Ep12 PWS Parent Clint Hurdle Shares Advice for Dads,...

PWS United ·

2024/10/15

In this episode of PWS United, Clint Hurdle, former MLB manager and proud dad to Madison (22), who is living with Prader-Willi syndrome, sits down with PWSA | USA CEO Stacy Ward for a heartfelt conversation. Clint shares his family’s journey from Madison’s diagnosis to connecting with PWSA | USA, offering fun personal stories and reflections. With nearly 50 years in Major League Baseball and over 1,000 managerial wins with the Colorado Rockies and Pittsburgh Pirates, Clint brings a unique

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45:10

Pulse 108: Prepare for Holidays, New Staff, Operation...

PWS United ·

2024/10/08

The latest in PWSA news, research, fundraising, family support, advocacy, and more. Be sure to check out the links! LINKS Our Staff - Prader-Willi Syndrome Association | USA (pwsausa.org) Halloween Fun for Everyone - Prader-Willi Syndrome Association | USA (pwsausa.org) Celebrate Thanksgiving Safely - Prader-Willi Syndrome Association | USA (pwsausa.org) Celebrate Holidays Safely - Prader-Willi Syndrome Association | USA (pwsausa.org) Share Your Halloween Tips and Tricks for PWSA | USA's PWS United

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49:25

Ep10 Clinical Trials

PWS United ·

2024/10/01

As research and treatment options for the PWS community continue to grow, we wanted to take a closer look at clinical trials, what are they, how are they run, what trials are available for PWS families, and how you can get involved. We hear personal perspectives from families and begin the journey of one family's first foray into a particular trial in the PWS community and how they moved past their years of skepticism to finally come to the decision to enroll. This episode, along with our Special

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42:14

Pulse 107: Service Dogs, Podcast Update, Narcolepsy...

PWS United ·

2024/09/24

Catch up on the latest news in the PWS community by listening to this edition of the PWS United podcast. LINKS PWSA | USA's Podcast has a New Name! - Prader-Willi Syndrome Association | USA (pwsausa.org) Service Dog at Home and at School - Prader-Willi Syndrome Association | USA (pwsausa.org) Obtaining and Training a Service Dog - Prader-Willi Syndrome Association | USA (pwsausa.org) Getting a Service Dog - Prader-Willi Syndrome Association | USA (pwsausa.org) Home - 2025 United in Hope PWS

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48:40

Ep8 Direct Support Professionals Week Panel Discussion

PWS United ·

2024/09/17

In this PWS United episode, we’re reflecting on Direct Support Professionals Week, which took place between September 8th and 14th. This special week is dedicated to honoring the incredible individuals who provide essential care and support to those living with developmental disabilities, including PWS. PWSA | USA CEO, Stacy Ward, leads an important discussion on the history and significance of this week, and how direct support professionals continue to make a difference in the PWS community

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41:43

Ep7 Edition 106: PWSA | USA Pulse

PWS United ·

2024/09/10

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We're bringing the newest edition of our Pulse newsletter, this time with some conversation and personal insight. Catch up on the latest news in the PWS community by listening to this edition of the PWS United podcast. LINKS Join PWS Connect on Discord TREND Connect Community and Research Initiative (google.com) The Importance of Newborn Screening - Prader-Willi Syndrome Association

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40:39

Ep6 What's the Big Deal About Exercise?

PWS United ·

2024/09/03

Exercise is not a dirty word! Kat Lucero, PWSA | USA Board Member and certified Integrative Health and Wellness Coach and Stacy Ward, PWSA | USA's CEO, discuss the healthy and unhealthy ways we use exercise. Kat shares the many benefits exercise has on our physical and mental health, the variety of ways caregivers can fit exercise and movement into their busy lives, how children benefit from their parent's understanding of health and wellness, group exercise, and more. Does exercise look different

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35:27

Advocating for Change: A Conversation with Dorothea...

PWS United ·

2024/08/30

In this episode of PWS Connect Podcast, we sit down with Dorothea Lantz, Director of Community Engagement at PWSA | USA, for an insightful discussion about recent and upcoming advocacy efforts. Dorothea offers a recap of the May 2024 D.C. Fly-In and discusses the recent steps taken to advance our congressional requests made during the event. Looking ahead, she outlines exciting initiatives and programs for advocacy in 2025. Dorothea also discusses the crucial steps needed to ensure access to DCCR if

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45:07

PWS BIPOC Affinity Group

PWS United ·

2024/08/30

We spoke with PWS parents and advocates, Dini Rao and Gennelle Conway, about the growing PWS BIPOC Affinity Group. We discussed the experiences and challenges of people of color in the medical and PWS world, implicit bias, personal prejudice, and systemic racism, and how people can be allies in their own lives and public spaces. We also mention a variety of valuable and informative resources so please be sure to check out the links below! If you are a person of color or raising a person of color in

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19:44

Edition 104: PWSA | USA Pulse

PWS United ·

2024/08/30

Carrie and Anne, from PWSA | USA's Communication Dept., share the news and resources from PWSA | USA's Pulse newsletter, edition #104. Our Pulse covers upcoming fundraising events and conferences, advocacy highlights and actions, family support resources and offerings, the latest in research, trial opportunities and more. The Pulse newsletter is published digitally every Friday. Future podcast Pulse episodes will air the following Tuesday. Links: Planned Giving Webpage "Less Than No One"

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10:27

Back to School: PWSA | USA Special Edition Pulse

PWS United ·

2024/08/30

We want to make sure the PWS community is aware of the multiple resources offered by PWSA | USA to help you and your loved one with PWS have a successful school year. From suggestions to help ease back to school anxiety for both individual and caregiver, tips for IEPs, our School Success Summit and more, this episode, along with the relevant links, supports your family in having a happy, successful, and confident school year. Links: School Success Tool Kit Donate to PWSA | USA Join our Pulse

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05:00

PWS Connect Teaser

PWS United ·

2024/08/23

We are thrilled to announce the upcoming launch of PWS Connect, a brand-new podcast from PWSA | USA, debuting Friday, August 30, 2024! PWS Connect will be your go-to source for the latest news, research, advocacy, and family support in the Prader-Willi syndrome community. This podcast brings together voices from across the PWS landscape, offering valuable insights and practical advice to empower and support those affected by PWS.Learn more about Prader-Willi Syndrome and PWSA | USA at

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