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

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 Professional Providers

50th Anniversary

PWSA Memory: PWSA-Pulse-May-2021.pdf

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

Events

Financial Security Webinar: Webinar Registration - Zoom

Fundraisers

United We Brunch - Campaign

The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Members Sought for the Drug Utilization Review Board

PWS Awareness Month Proclamation Toolkit

[e-mail]

[e-mail]

Family Support

Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA

Family Resource Program - Parents/Caregiver Focus Groups

Family Resource Program - Sibling Focus Groups

Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA

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

Research

VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA

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

Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA

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

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