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

Update: 2025-12-09

Description

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.

24 Hour Crisis Line: 941-312-0400

In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA

Angel Drive

Angel Drive 2025 - Prader-Willi Syndrome Association | USA

Stacy’s Thank You Message

Hope in Action: Carol's Story

PWSA Memory

1997_Vol-XXII-N4-Sept-1997.pdf

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

Events | Fundraisers

Claus for a Cause Thank You Message

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea's Journey with PWS - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Podcast

Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United

Advocacy

A Milestone for Hope: U.S. House Passes the Give Kids a Chance Act - Prader-Willi Syndrome Association | USA

Family Support

Reflections from PWSA | USA’s Visit to PANTHERx Rare Pharmacy - Prader-Willi Syndrome Association | USA

Adoption Spotlight for Santino, contact: eschmitt@chomepgh.org or 412-441-4484

Ask Nurse Lynn: Testosterone and Low LH - Prader-Willi Syndrome Association | USA

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

Research

HERO Study for Treatment of Hyperphagia in PWS

PWS-PARTICIPANTS-NEEDED.pdf Flyer for adult with PWS relationship study

Pre-screening Survey for adults with PWS for relationship study

New Research Study Seeks Caregiver Insights on Hyperphagia in PWS - Prader-Willi Syndrome Association | USA

Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp

Screening Questionnaire for the Study Titled: The Effects of a Caregiver-Implemented Power Card Strategy on Social Play Skills in Children with Prader-Willi Syndrome | QuestionPro Survey

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

Announcements/Resource Spotlight

Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA

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

Comments

In Channel

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

2025-12-0928:27

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

2025-12-0240:44

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

2025-11-2501:00:28

Ep67: Broken Systems, Enduring Love, Single Caregivers Series

2025-11-1855:08

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

2025-11-1136:21

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

2025-11-0445:06

Ep64: Henry McDonald: Dynamic Duo, Superhero

2025-10-2833:19

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

2025-10-2136:45

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

2025-10-1458:45

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

2025-10-0730:01

Ep60: Rockie Penta: Caregiver, Roommate, Best Friend

2025-09-3026:36

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

2025-09-2338:43

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

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

#box-pro-ellipsis-176574548486572{-webkit-line-clamp:2;}Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships Study

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

PWSA | USA

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