PWS United
By PWSA | USA
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Episodes: 93
Description
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 of life and empower those affected by Prader-Willi syndrome.
| Episode | Date |
|---|---|
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Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues
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May 12, 2026 |
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Ep 91 PWS Awareness Month is Here: How to Get Involved
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May 05, 2026 |
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Ep90 Staying Curious: Continuing the Equity Conversation
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Apr 28, 2026 |
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Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog
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Apr 21, 2026 |
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Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx
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Apr 14, 2026 |
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Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary
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Apr 07, 2026 |
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Ep86: Homeschooling, The Ins and Outs of Educational Choice
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Mar 31, 2026 |
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Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices on Vykat 3
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Mar 24, 2026 |
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Ep84: Welcoming PWSA | USA's Equity Committee
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Mar 17, 2026 |
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Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities
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Mar 10, 2026 |
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Ep82: Kady Sweeney: See the Potential, Savor Typical Moments
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Mar 03, 2026 |
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Ep81 Pulse 141: Caregivers Day, Voices on Vykat, Board Member Spotlights
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Feb 24, 2026 |
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Ep80: What's in Store for PWSA | USA in 2026?
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Feb 17, 2026 |
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Ep79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes
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Feb 10, 2026 |
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Ep78: Miriam Chernick: Educating the Community
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Feb 03, 2026 |
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Ep77: Limits, Perspective, and Mental Wellness
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Jan 27, 2026 |
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Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial
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Jan 21, 2026 |
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Ep75: Global PWS Registry 2.0
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Jan 13, 2026 |
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Ep74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026
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Jan 06, 2026 |
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Ep73: Stacy's End of Year Message
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Dec 30, 2025 |
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Ep72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-Up
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Dec 23, 2025 |
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Ep71: Christian Garzia: Humor, Fairness, and Protection
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Dec 16, 2025 |
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Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships Study
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Dec 09, 2025 |
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Ep69: Joe Gill: Inclusion, Purpose, and the Little Things
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Dec 02, 2025 |
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Ep68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research Spotlight
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Nov 25, 2025 |
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Ep67: Broken Systems, Enduring Love, Single Caregivers Series
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Nov 18, 2025 |
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Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude
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Nov 11, 2025 |
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Ep65: Grit, Grace, and Family, Single Caregivers Series
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Nov 04, 2025 |
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Ep64: Henry McDonald: Dynamic Duo, Superhero
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Oct 28, 2025 |
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Ep63: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction
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Oct 21, 2025 |
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Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success
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Oct 14, 2025 |
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Ep61 Pulse 132: Gala Recap, DUR Boards, TREND Journey Prompts, Bullying Prevention Month
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Oct 07, 2025 |
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Ep60: Rockie Penta: Caregiver, Roommate, Best Friend
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Sep 30, 2025 |
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Ep59 Pulse 131: Virtual Gala Auction, Care Until Cure, Give Kids a Chance Act, NICU and Newborns
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Sep 23, 2025 |
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EP58: Recognizing the Unsung Heroes of PWS
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Sep 16, 2025 |
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Ep57 Pulse 130: Direct Support Professionals Week, DUR Written Testimony, Recursos en Español
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Sep 09, 2025 |
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EP56: Celebrating One Year of Podcasting
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Sep 02, 2025 |
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EP55: Hope, Perseverance, and Soleno's Path to an FDA-Approval for Prader-Willi Syndrome
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Aug 26, 2025 |
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Ep55 (Bonus Episode!): Leave a Lasting Legacy with PWSA | USA
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Aug 21, 2025 |
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EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPs
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Aug 19, 2025 |
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Ep53: Empowering Families with Dr. Destiny Pacha, Parent Submissions
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Aug 12, 2025 |
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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
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Aug 05, 2025 |
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Ep51 ADA History and Advocacy
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Jul 29, 2025 |
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Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf Gimmes
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Jul 22, 2025 |
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Ep 49: Endocrine in Teens and Adults: Conference Session
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Jul 15, 2025 |
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Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement Letter
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Jul 08, 2025 |
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Ep 47: Nutrition Recommendations for PWS: Conference Session
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Jul 01, 2025 |
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Ep46: Pioneers in PWS Series - The Parent Mentoring Program
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Jun 17, 2025 |
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Ep45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, Livestream
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Jun 10, 2025 |
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Ep 44: PWSA, IPWSO, FPWR: United in Hope
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Jun 03, 2025 |
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Ep43: All Things Conference
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May 27, 2025 |
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Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner
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May 20, 2025 |
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Ep41: PWS Origin Stories, Success, and Awareness
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May 13, 2025 |
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Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary
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May 06, 2025 |
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Ep39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics
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Apr 29, 2025 |
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Ep38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security Webinar
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Apr 22, 2025 |
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Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1s
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Apr 15, 2025 |
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Ep36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling Guide
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Apr 08, 2025 |
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Ep35: PWS and Sibling Support
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Apr 01, 2025 |
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Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide
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Mar 25, 2025 |
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Ep33: Special Education and the Department of Ed.
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Mar 18, 2025 |
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Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications
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Mar 11, 2025 |
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Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch
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Mar 04, 2025 |
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Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action
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Feb 25, 2025 |
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Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board
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Feb 18, 2025 |
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Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job Announcement
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Feb 11, 2025 |
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Ep27: Advocacy with Terry Wilcox from Patients Rising
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Feb 04, 2025 |
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Ep26: Clinical Trial Perspectives Part 1
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Jan 28, 2025 |
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Ep25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, Sertraline
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Jan 21, 2025 |
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Ep24 TREND & PWS Connect
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Jan 14, 2025 |
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Ep 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community Stories
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Jan 07, 2025 |
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Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays
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Dec 24, 2024 |
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Ep21 Meet the PWSA | USA Staff
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Dec 17, 2024 |
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Ep20 Pulse 112: Angel Drive, Georgia Advocacy, Growth Hormone, Clinical Trial Journey
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Dec 10, 2024 |
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Ep19 Caring for the Caregiver
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Dec 03, 2024 |
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Ep18 National Adoption Month, Adopting a Loved One with PWS
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Nov 26, 2024 |
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Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study
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Nov 19, 2024 |
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Ep16 Self-Care, Self-Advocacy, and Gratitude
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Nov 12, 2024 |
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Ep15 Pulse 110: Angel Drive Kick-Off, NORD Summit, Family Caregiver Month, Clinical Trial Journey
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Nov 07, 2024 |
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Ep14: Adults with PWS Advisory Board
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Oct 29, 2024 |
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Ep13 Pulse109: Physical Therapy Month, Dominique Valenti, FDA Meeting, PWS Book Review
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Oct 22, 2024 |
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Ep12 PWS Parent Clint Hurdle Shares Advice for Dads, Personal Stories
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Oct 15, 2024 |
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Pulse 108: Prepare for Holidays, New Staff, Operation Holiday Cheer, & More
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Oct 08, 2024 |
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Ep10 Clinical Trials
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Oct 01, 2024 |
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Pulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & More
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Sep 24, 2024 |
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Ep8 Direct Support Professionals Week Panel Discussion
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Sep 17, 2024 |
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Ep7 Edition 106: PWSA | USA Pulse
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Sep 10, 2024 |
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Ep6 What's the Big Deal About Exercise?
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Sep 03, 2024 |
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Back to School: PWSA | USA Special Edition Pulse
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Aug 30, 2024 |
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Advocating for Change: A Conversation with Dorothea Lantz
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Aug 30, 2024 |
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Edition 104: PWSA | USA Pulse
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Aug 30, 2024 |
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PWS BIPOC Affinity Group
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Aug 30, 2024 |
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PWS Connect Teaser
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Aug 23, 2024 |