Best Pwsa Usa Podcasts (2025)

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Ep60: Rockie Penta: Caregiver, Roommate, Best Friend 26:36

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1h ago26:36

26:36

We are beginning a new podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. Today's episode, led by Elaine Towle, PWSA | USA Advocacy Specialist and mom to…

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Ep59 Pulse 131: Virtual Gala Auction, Care Until Cure, Give Kids a Chance Act, NICU and Newborns 38:43

7d ago38:43

38:43

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Gala Live Auction PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION 50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf PWSA Memory 1982_Vol-VIII-N5-Sept-Oct-1982.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Wil…

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EP58: Recognizing the Unsung Heroes of PWS 45:16

14d ago45:16

45:16

Direct Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement a…

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Ep57 Pulse 130: Direct Support Professionals Week, DUR Written Testimony, Recursos en Español 34:36

21d ago34:36

34:36

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Direct Support Professionals Week In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA PWSA Memory The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndr…

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EP56: Celebrating One Year of Podcasting 1:07:52

28d ago1:07:52

1:07:52

PWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire …

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EP55: Hope, Perseverance, and Soleno's Path to an FDA-Approval for Prader-Willi Syndrome 23:15

1M ago23:15

23:15

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 b…

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Ep55 (Bonus Episode!): Leave a Lasting Legacy with PWSA | USA 28:01

1M ago28:01

28:01

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…

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EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPs 29:14

1M ago29:14

29:14

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-Wil…

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Ep53: Empowering Families with Dr. Destiny Pacha, Parent Submissions 57:16

2M ago57:16

57:16

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 r…

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Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences Webinar 36:13

2M ago36:13

36:13

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 …

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Ep51 ADA History and Advocacy 55:53

2M ago55:53

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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 so…

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

2M ago27:11

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…

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

3M ago56:31

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…

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

3M ago48:30

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…

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

3M ago56:31

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, curren…

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

4M ago28:26

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-…

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

4M ago32:10

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 …

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

4M ago23:24

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 fut…

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Ep43: All Things Conference 37:34

4M ago37:34

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 i…

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

4M ago27:23

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 2…

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

5M ago47:10

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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, suppo…

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

5M ago41:15

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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 Professi…

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

5M ago22:44

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 appet…

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

5M ago45:02

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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 opportuni…

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

6M ago29:38

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…

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

6M ago32:51

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 o…

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Ep35: PWS and Sibling Support 45:16

6M ago45:16

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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 wron…

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

6M ago38:43

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 …

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

7M ago42:58

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…

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

7M ago45:39

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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 Mura…

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

7M ago1:32:11

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 t…

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

7M ago38:22

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 Found…

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

8M ago53:55

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 bre…

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

8M ago38:33

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 Res…

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

8M ago46:55

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 abo…

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Ep26: Clinical Trial Perspectives Part 1 50:17

8M ago50:17

50:17

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 par…

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Ep25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, Sertraline 39:00

8M ago39:00

39:00

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: [email protected] PWS Rare Aware Art Share - Prader-Willi Syndrome Association …

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Ep24 TREND & PWS Connect 58:55

9M ago58:55

58:55

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 th…

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Ep 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community Stories 31:14

9M ago31:14

31:14

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 …

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Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays 34:08

9M ago34:08

34:08

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 …

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Ep21 Meet the PWSA | USA Staff 1:55:42

10M ago1:55:42

1:55:42

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 wis…

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Ep20 Pulse 112: Angel Drive, Georgia Advocacy, Growth Hormone, Clinical Trial Journey 36:27

10M ago36:27

36:27

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:…

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Ep19 Caring for the Caregiver 37:15

10M ago37:15

37:15

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 …

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Ep18 National Adoption Month, Adopting a Loved One with PWS 42:42

10M ago42:42

42:42

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 c…

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Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study 43:45

11M ago43:45

43:45

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 Act…

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Ep16 Self-Care, Self-Advocacy, and Gratitude 58:22

11M ago58:22

58:22

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 …

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Ep15 Pulse 110: Angel Drive Kick-Off, NORD Summit, Family Caregiver Month, Clinical Trial Journey 46:41

11M ago46:41

46:41

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 adult…

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Ep14: Adults with PWS Advisory Board 22:41

11M ago22:41

22:41

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. …

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Ep13 Pulse109: Physical Therapy Month, Dominique Valenti, FDA Meeting, PWS Book Review 1:10:18

11M ago1:10:18

1:10:18

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 Unite…

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Ep12 PWS Parent Clint Hurdle Shares Advice for Dads, Personal Stories 41:33

12M ago41:33

41:33

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 …