Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide

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

Awareness Topics

Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA

Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA

2025 DD Awareness Month: We’re Here All Year! – NACDD

Women in PWS: Moving Forward Together - Prader-Willi Syndrome Association | USA

What is neurodiversity? - Harvard Health

Neurodiversity and Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA

United in Hope Conference

High-Level 2025 Conference Schedule

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

50th Anniversary

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

PWSA Memory: Vanja Holm's contribution to our knowledge of PWS - IPWSO

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

Events

Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome

Fundraisers

Zahra's Night of Light - Campaign

United We Brunch - Campaign

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Take Action: Help Pass the Sunshine Genetics Act in Florida! - Prader-Willi Syndrome Association | USA

Soleno Sibling/Family Member Stories: stories@soleno.life

Soleno Caregiver Photo & Story Release Form (for minor siblings) Feb 2025.docx

Soleno Adult Sibling Photo & Story Release Form Feb 2025.docx

Family Support

Staying Cool at Conference - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Respiratory Infections - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

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

Research

Tirzepatide Study: EndocrineResearch@seattlechildrens.org or 206-987-2540

PWSA | USA Webinar: About Harmony Biosciences TEMPO PWS Clinical

Announcements/Resource Spotlight

What is Early Intervention?

 

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