Prader-Willi Syndrome Association USA

Prader-Willi Syndrome Association USA We hope you will suggest the PWSA | USA page to your friends! Website: www.pwsausa.org It is the most common genetic cause of obesity.

Prader-Willi syndrome is a non-hereditary birth defect resulting from a disorder of chromosome 15. It is a serious, life-long, and life threatening medical condition occurring in 1:12,000-1:15,000 live births in both genders and all races. It is characterized by hypotonia (low muscle tone), hyperphagia (uncontrollable hunger), cognitive impairments, and difficult behaviors.

Thanks to the generosity of an anonymous donor, PWSA | USA is excited to bring back Operation Holiday Cheer for 2025! 💙 ...
11/18/2025

Thanks to the generosity of an anonymous donor, PWSA | USA is excited to bring back Operation Holiday Cheer for 2025! 💙 This program provides gift cards to help ease holiday expenses for families affected by Prader-Willi syndrome. Families can apply for themselves or on behalf of another individual/family. The deadline to submit applications is Monday, December 1, 2025, so don’t wait! Selected families will be notified by Friday, December 5.

Download the application here: https://www.pwsausa.org/operation-holiday-cheer-returns-to-support-pws-families-in-2025/
Email completed applications to info@pwsausa.org.

11/17/2025

Hope in Action - Shaping the Future of PWS 💙📽️
For 50 years, PWSA | USA has been guided by families, leaders, and visionaries who believed in a stronger future for people living with Prader-Willi syndrome. In this installment of our Hope in Action video series, parents David and Janice Agarwal reflect on the legacy that welcomed them into the PWS community and the spirit of passing the baton to the next generation - from advancing research to exploring new possibilities. Help shape the next 50 years of hope by supporting the 2025 Angel Drive: https://www.pwsausa.org/angel-drive-2025/

In a recent PWS United episode with single caregivers, it was suggested that a safe, virtual space for these caregivers ...
11/16/2025

In a recent PWS United episode with single caregivers, it was suggested that a safe, virtual space for these caregivers to connect would be appreciated and beneficial. If you're a single parent raising and caregiving for an individual with Prader-Willi syndrome looking for support and connection with other single parents, check out our new Facebook group at https://www.facebook.com/share/g/1RvbkhMTe1/

Listen to the PWS United episode at https://pwsunited.podbean.com/e/ep65-grit-grace-and-family-single-caregivers-series/

International 15q Day is intended to raise awareness of three distinct syndromes caused by changes within the specific q...
11/15/2025

International 15q Day is intended to raise awareness of three distinct syndromes caused by changes within the specific q11 to q13 region of chromosome 15 (called 15q): Prader-Willi Syndrome, Angelman Syndrome, and Dup15q Syndrome.
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In honor of International 15q Day, and our PWS community, we hope that you and your family and friends are inspired to donate $15 to PWSA | USA on Saturday, November 15th! You can donate at https://www.pwsausa.org/angel-drive-2025/
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Your donations help us support the PWS community with our life-changing programs—like school advocacy, medical crisis support, and caregiver resources.
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Thank you! Everything helps so please remember to share with your friends.

November 14th is World Diabetes Day. While diabetes is not a certain outcome of PWS, it is not uncommon for individuals ...
11/14/2025

November 14th is World Diabetes Day. While diabetes is not a certain outcome of PWS, it is not uncommon for individuals with PWS to develop it over time. People with PWS may be at higher risk due to a combination of metabolic and hormonal differences that affect how their bodies use energy and manage blood sugar. The good news is that with balanced nutrition, regular physical activity, ongoing monitoring, and early interventions, individuals can lower their chances of developing diabetes and lessen its impact if it does occur. Our newest blog provides a basic overview of diabetes in people with PWS.

If you are concerned about diabetes, the most important first step is to speak with your loved one’s healthcare provider. Together, you can create a plan for prevention and wellness.

You can read this blog article at https://www.pwsausa.org/prader-willi-syndrome-and-diabetes/

11/13/2025

We loved getting an inside look at PANTHERx Rare Pharmacy’s headquarters in Pittsburgh, PA! A few members of our team had the chance to share about Prader-Willi syndrome and the work we do at PWSA | USA, while connecting with the PANTHERx team. Thank you, PANTHERx Rare, for welcoming us and allowing us to raise awareness for our community 💚

*Clarification: PANTHERx Rare is the dispensing pharmacy for the FDA-approved treatment of hyperphagia in PWS.

Have you been in the PWS community long enough to remember when the internet chat groups began? (This communications coo...
11/13/2025

Have you been in the PWS community long enough to remember when the internet chat groups began? (This communications coordinator came is as the Yahoo email groups were slowly giving way to Facebook groups.)

This column from The Gathered View of September 1997 asks readers, "Have you visited PWSA's World Wide Web site lately?" As technology advances, so too does the support people are able to tap into. Chat rooms, email threads, Facebook groups...what may be the next iteration in virtual family support?

Check out the mentioned issue of The Gathered View athttps://www.pwsausa.org/wp-content/uploads/2022/01/1997_Vol-XXII-N4-Sept-1997.pdf

Below are links to two articles from the Journal of Clinical Sleep Medicine on excessive daytime sleepiness, pitolisant,...
11/11/2025

Below are links to two articles from the Journal of Clinical Sleep Medicine on excessive daytime sleepiness, pitolisant, and PWS. Click on the links to read these articles.

A proof-of-concept study of pitolisant for excessive daytime sleepiness in
patients with Prader-Willi syndrome:https://www.pwsausa.org/wp-content/uploads/2025/11/Pitolisant-PWS-Phase-2-trial-publication_J-Clin-Sleep-Medicine.pdf

Pitolisant may lessen not only sleepiness but improve hyperphagia and
behavior problems in Prader-Willi syndrome:https://www.pwsausa.org/wp-content/uploads/2025/11/Grigg-Damberger-editorial-in-J-Clin-Sleep-Medicine_Pitolisant-for-PWS.pdf

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude*Listen to the latest in ...
11/11/2025

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude
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Listen to the latest in PWSA | USA events and PWS news in research, family support, and advocacy using your favorite podcast platform or at https://pwsunited.podbean.com/

To all of our friends, family, and community members who have served and continue to serve, we thank you for your servic...
11/11/2025

To all of our friends, family, and community members who have served and continue to serve, we thank you for your service! Happy Veterans Day from all of us at PWSA | USA!

Skin picking is a common and difficult behavior in individuals with PWS, often triggered or worsened by anxiety, transit...
11/10/2025

Skin picking is a common and difficult behavior in individuals with PWS, often triggered or worsened by anxiety, transitions, boredom, or skin irritation. Skin picking behavior may appear as frequent touching, rubbing, or scratching of the skin or nails, sometimes leading to sores or other injuries. In individuals with Prader-Willi syndrome, this behavior can be repetitive and difficult to control, often linked to sensory seeking or anxiety rather than intentional self-harm. This document provides information on strategies and interventions to help reduce the chances of or mitigate the behavior of skin picking. You will also find samples of specific sensory activities and a sample daily sensory routine; all designed for individuals with Prader-Willi syndrome.

Check out our document Strategies, Interventions, and Routines for the Prevention or Mitigation of Skin Picking in Individuals with Prader-Willi Syndrome athttps://www.pwsausa.org/wp-content/uploads/2025/11/Strategies-Interventions-and-Routines-for-the-Prevention-or-Mitigation-of-Skin-Picking-in-Individuals-with-Prader-Willi-Syndrome.pdf

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1032 E Brandon Boulevard 4744
Brandon, FL
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