PWS United cover art

All Episodes

PWS United — 93 episodes

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Title
1

Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues

2

Ep 91 PWS Awareness Month is Here: How to Get Involved

3

Ep90 Staying Curious: Continuing the Equity Conversation

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Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog

5

Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx

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Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary

7

Ep86: Homeschooling, The Ins and Outs of Educational Choice

8

Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices on Vykat 3

9

Ep84: Welcoming PWSA | USA's Equity Committee

10

Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities

11

Ep82: Kady Sweeney: See the Potential, Savor Typical Moments

12

Ep81 Pulse 141: Caregivers Day, Voices on Vykat, Board Member Spotlights

13

Ep80: What's in Store for PWSA | USA in 2026?

14

Ep79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes

15

Ep78: Miriam Chernick: Educating the Community

16

Ep77: Limits, Perspective, and Mental Wellness

17

Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial

18

Ep75: Global PWS Registry 2.0

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Ep74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026

20

Ep73: Stacy's End of Year Message

21

Ep72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-Up

22

Ep71: Christian Garzia: Humor, Fairness, and Protection

23

Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships Study

24

Ep69: Joe Gill: Inclusion, Purpose, and the Little Things

25

Ep68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research Spotlight

26

Ep67: Broken Systems, Enduring Love, Single Caregivers Series

27

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude

28

Ep65: Grit, Grace, and Family, Single Caregivers Series

29

Ep64: Henry McDonald: Dynamic Duo, Superhero

30

Ep63: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction

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Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success

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Ep61 Pulse 132: Gala Recap, DUR Boards, TREND Journey Prompts, Bullying Prevention Month

33

Ep60: Rockie Penta: Caregiver, Roommate, Best Friend

34

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

35

EP58: Recognizing the Unsung Heroes of PWS

36

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

37

EP56: Celebrating One Year of Podcasting

38

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

39

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

40

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

41

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

42

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

43

Ep51 ADA History and Advocacy

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

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Ep 49: Endocrine in Teens and Adults: Conference Session

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

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Ep 47: Nutrition Recommendations for PWS: Conference Session

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Ep46: Pioneers in PWS Series - The Parent Mentoring Program

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

50

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

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Ep43: All Things Conference

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

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Ep41: PWS Origin Stories, Success, and Awareness

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

55

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

56

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

57

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

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

59

Ep35: PWS and Sibling Support

60

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

61

Ep33: Special Education and the Department of Ed.

62

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

63

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

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

65

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

66

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

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Ep27: Advocacy with Terry Wilcox from Patients Rising

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Ep26: Clinical Trial Perspectives Part 1

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

70

Ep24 TREND & PWS Connect

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

72

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

73

Ep21 Meet the PWSA | USA Staff

74

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

75

Ep19 Caring for the Caregiver

76

Ep18 National Adoption Month, Adopting a Loved One with PWS

77

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

78

Ep16 Self-Care, Self-Advocacy, and Gratitude

79

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

80

Ep14: Adults with PWS Advisory Board

81

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

82

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

83

Pulse 108: Prepare for Holidays, New Staff, Operation Holiday Cheer, & More

84

Ep10 Clinical Trials

85

Pulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & More

86

Ep8 Direct Support Professionals Week Panel Discussion

87

Ep7 Edition 106: PWSA | USA Pulse

88

Ep6 What's the Big Deal About Exercise?

89

PWS BIPOC Affinity Group

90

Edition 104: PWSA | USA Pulse

91

Advocating for Change: A Conversation with Dorothea Lantz

92

Back to School: PWSA | USA Special Edition Pulse

93

PWS Connect Teaser