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

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

Events

United in Hope Conference

Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems

Home - 2025 United in Hope PWS Conference

Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA

For info on sponsorship opportunities: development@pwsausa.org

50^th Anniversary

Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign

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

Other Events

BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome

Fundraisers

Prader-Willi Hot Stove | Powered By GiveSmart

Zahra's Night of Light - Campaign

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025 - Prader-Willi Syndrome Association | USA

Call to Action for Illinois Families: Witness Slip

Illinois General Assembly - Full Text of HR0173

Family Support

Her Own Home with Family Nearby - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Interventions for Rectal Picking - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA

I Am Full – Stories for Jacob Book Club Discussion: dan_yashinsky@hotmail.com

Research

TREND Report: Gastrointestinal Issues in the PWS Community - Prader-Willi Syndrome Association | USA

New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA

Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA

Announcements/Resource Spotlight

Call for Nominations or Board of Directors

mailto:sward@pwsausa.org

LisaGrazianoLMF​T@gmail.com

Community Publications - Prader-Willi Syndrome Association | USA

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