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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 qual ...
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(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 P…
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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…
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Pulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & More
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42:14
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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 Synd…
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Ep8 Direct Support Professionals Week Panel Discussion
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48:40
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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 importan…
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) 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 ben…
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Back to School: PWSA | USA Special Edition Pulse
10:27
10:27
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) 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 in…
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Advocating for Change: A Conversation with Dorothea Lantz
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) In this episode of PWS United, 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. F…
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) 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, f…
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) 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…
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(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We are thrilled to announce the upcoming launch of PWS United, a brand-new podcast from PWSA | USA, debuting Friday, August 30, 2024! PWS United will be your go-to source for the latest news, research, advocacy, and family support …
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