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

Update: 2025-05-20

Description

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 2025 Conference Schedule Professional Providers

50th Anniversary

PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator

Prader Silly: A Night of Rare Laughs - Campaign

bipocpws@gmail.com

Fundraisers

Lyra Mills's fundraising page for Prader-Willi Syndrome Association

Filling Cups with PWS Awareness - Prader-Willi Syndrome Association | USA

United We Brunch - Campaign

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Lydia and Dalyas Dreamers - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

PWSA Advocates Represent Disability Needs and Rights in DC - Prader-Willi Syndrome Association | USA

PWS Awareness Month Proclamation Toolkit

advocacy@pwsausa.org

etowle@pwsausa.org

Family Support

Adults with PWS Advisory Board Spotlight: Conor Heybach - Prader-Willi Syndrome Association | USA

PWSA | USA Family Support Webinar: Creating Financial Security for a Loved One with PWS

Family Resource Program - Parents/Caregiver Focus Groups

Family Resource Program - Sibling Focus Groups

Ask Nurse Lynn: Genetics and Weight Gain - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

Aardvark’s HERO Clinical Trial Webinar: Webinar Registration - Zoom

Home | Hero Trial

Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA

Announcements/Resource Spotlight

GI-Algorithm-Chart-2022.pdf

Intro Music: https://www.bensound.com/; License certificate #2242442

Comments

In Channel

EP58: Recognizing the Unsung Heroes of PWS

2025-09-1645:16

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

2025-09-0934:36

EP56: Celebrating One Year of Podcasting

2025-09-0201:07:52

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

2025-08-2623:15

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

2025-08-2128:01

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

2025-08-1929:14

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

2025-08-1257:16

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

2025-08-0536:13

Ep51 ADA History and Advocacy

2025-07-2955:53

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

2025-07-2227:11

Ep 49: Endocrine in Teens and Adults: Conference Session

2025-07-1556:31

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

2025-07-0848:30

Ep 47: Nutrition Recommendations for PWS: Conference Session

2025-07-0156:31

Ep46: Pioneers in PWS Series - The Parent Mentoring Program

2025-06-1728:26

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

2025-06-1032:10

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

2025-06-0323:24

Ep43: All Things Conference

2025-05-2737:34

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

2025-05-2027:23

Ep41: PWS Origin Stories, Success, and Awareness

2025-05-1347:10

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

2025-05-0641:15

00:00

1.0x

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

#box-pro-ellipsis-175832746084866{-webkit-line-clamp:2;}Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner

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

PWSA | USA

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