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

24 Hour Crisis Line: 941-312-0400

Direct Support Professionals Week

In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA

PWSA Memory

The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndrome Association | USA

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

Events

PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign

Hotel Options: Where Can We Take You? | Endless Experiences & Top Locations | Marriott Bonvoy

Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD - Prader-Willi Syndrome Association | USA

Journey of Hope Gala Honoree Spotlight: Janalee Heinemann - Prader-Willi Syndrome Association | USA

Fundraisers

Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Calling Minnesota PWS Families - Prader-Willi Syndrome Association | USA

Calling Montana PWS Families - Prader-Willi Syndrome Association | USA

Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA

Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA

Family Support

Grandparent Perspectives - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Glucose Monitoring - Prader-Willi Syndrome Association | USA

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

Research

VYKAT XR FAQ for Parents

Social Skills in Children with Prader-Willi Syndrome: A Survey of Caregivers | QuestionPro Survey

[email protected]

Harmony Biosciences TEMPO Trial Webinar Recording: Harmony Biosciences TEMPO PWS Study Webinar

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

Gainesville, Florida
UF Shands Childrens Hospital
Contact: Jennifer Miller, MD
Phone: (352) 294-8229
Email: [email protected]

www.heroforpws.com

Recursos in Espanol:

"Hoja de información del estudio clínico HERO"

"El ensayo HERO"

una folleto "Estudio HERO"

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

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Sleep Summit - Prader-Willi Syndrome Association | USA

This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

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