Prader-Willi Syndrome Association USA

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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.

03/16/2026

March is National Nutrition Month and we're celebrating by sharing a PWS-friendly recipe every Monday of this month. Today's recipe was shared by Dini Rao, mom to Ayoni, living with PWS.

Please feel free to make any necessary adaptations to ingredients and measurements based on the needs of your loved one with PWS. These recipes are simply to offer meal ideas for our PWS community.

For more insight on PWS Nutrition, please read this blog by Dietician Michael Tan: https://www.pwsausa.org/nutrition-in-the-pws-family/

03/16/2026

You're Invited!
🍷 Solidarity & Spice: A Rare Wine Pairing Dinner
📍 Where: Rasika West End | Washington, D.C.
📅 When: Saturday, April 25, 2026

Enjoy an extraordinary six-course wine pairing dinner hosted by Anish Bhatnagar, CEO of Soleno Therapeutics, and Dini Rao, Wine Curator, Mom to Ayoni (living with PWS), and PWSA | USA Board of Directors Member, at the renowned Rasika West End.

More than a remarkable culinary experience, this evening brings our community together for an important purpose. Join us to launch and support the “No More Lasts” PWSA | USA Equity Project. The “No More Lasts” initiative aims to close the gap in racial, ethnic, religious and other disparities for those affected by Prader-Willi syndrome by accelerating diagnoses, access to evidence-based care, and inclusion in research — so no community is left last.

Learn more and purchase tickets: https://give.pwsausa.org/event/solidarity-and-spice/e758863

03/15/2026

We are extending our submission period for the Rare Aware Art Share, an art share by individuals with Prader-Willi syndrome, to April 1. This year's theme focuses on Advocacy and Awareness as we prepare to head to Washington for our D.C. Fly-In. Whether they are attending the event in D.C. or not, individuals with PWS are encouraged to submit art to share with each other, our representatives, and the PWS community.

Learn more and submit at https://www.pwsausa.org/pws-rare-aware-art-share/

03/15/2026

Sarah Kasaby is PWSA’s Information and Referral Specialist, mom to Khaled (living with PWS), and dancer extraordinaire.

If you have a loved one with Prader-Willi syndrome and need support from PWSA | USA, please contact us at info@pwsausa.org.

03/15/2026

The 2026 Clint Hurdle Hot Stove Dinner Silent Auction is LIVE! Start bidding on incredible items like a 5-night European vacation (pick the city of your choice from Rome, Paris, Vienna, or Prague), a Torrey Pines Golf Adventure, a signed and framed photo from Larry Bird, a Tory Burch crossbody purse, Tiffany & Co. sunglasses, and so much more!

You can also still grab tickets to attend the Hot Stove Dinner in person or virtually. Join Clint and Karla Hurdle (parents to Maddie, living with PWS) on March 21, 2026, at the Bradenton Country Club for an unforgettable evening featuring dinner, live entertainment, raffle prizes, and the always-anticipated Coconut Golf Ball Drop 🌴

Learn more, purchase tickets, and place your auction bids at https://e.givesmart.com/events/MUE/.

03/14/2026

Did you know: There are no FDA-approved medicines to treat excessive daytime sleepiness (EDS) in people with Prader-Willi syndrome? Learn about a clinical trial now underway for people age 6 years and older with and : https://www.tempopwsstudy.com/

03/14/2026

"I would like to share our story of Jake traveling with his sister to LA after Christmas and then back home by himself. This was his first time traveling without us and first time for him traveling alone as he came back from LA - truly a moment we thought might never happen." - submitted by Paige Rivard, mom to Jake (15, living with PWS)

You can read her full blog at https://praderwillinews.com/columns/celebrating-milestone-life-prader-willi-syndrome/

Submit your own Spotlight on PWS at https://www.pwsausa.org/get-involved/share-your-story/

03/13/2026

We are recognizing Sleep Awareness Week (March 9-14) and World Sleep Day (March 14) because disordered sleep is a common issue in individuals with Prader-Willi syndrome. Many of our loved ones are diagnosed with obstructive sleep apnea, central sleep apnea, cataplexy, narcolepsy, and/or excessive daytime sleepiness. These symptoms can greatly impact mental cognition, physical stamina, and social and behavioral interactions. Many individuals with PWS have experienced improvement in their quality of life when sleep disorders are properly addressed. For some families, the intervention has been Harmony Bioscience’s TEMPO clinical trial of pitolisant.

If you're interested in learning more about how excessive daytime sleepiness affects individuals with PWS, and how the TEMPO trial of pitolisant has helped, check out this week's blog at https://www.pwsausa.org/finding-a-viable-treatment-for-excessive-daytime-sleepiness-through-the-tempo-trial/

03/12/2026

Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome. On January 29th, 2026, TREND Community hosted a webinar called "Shedding Light on Sleep Disorders in Prader-Willi Syndrome." The discussion centered on caregiver experiences and clinical insight, with a focus on listening, learning, and understanding the real-world impact of sleep issues in PWS.

This is not a traditional lecture. It’s an honest conversation about what families see, feel, and wish they had known sooner — paired with guidance from clinicians who help translate lived experience into care.

Watch this webinar recording at https://www.youtube.com/watch?v=grx12hths74

Learn more about TREND Community: https://trend.community/
Join our PWS Connect Discord group: https://www.pwsausa.org/trend-community/

03/11/2026

Excessive daytime sleepiness (EDS) affects many individuals with Prader-Willi syndrome.

In this video, provided by Harmony Biosciences, PWS mom Erin shares her daughter Victoria’s experience with EDS and why clinical trials matter.

In honor of , we’re helping spread the word about the Phase 3 TEMPO study from Harmony Biosciences, which is researching Pitolisant, a potential treatment for excessive daytime sleepiness in individuals with PWS ages 6+.

A unique and convenient feature of the TEMPO trial is an at-home participation option, meaning all nurse’s visits and medical appointments come directly to you!

Learn more about the TEMPO study: https://www.tempopwsstudy.com/

03/11/2026

Our latest from Ask Nurse Lynn. Read the blog, find valuable links, and submit your own non-emergency medical question at https://www.pwsausa.org/category/ask-nurse-lynn/

03/10/2026

The Neurodevelopment Research Lab is conducting a study to understand social cognition in young people with PWS. Individuals with PWS ages 8-20 and their caregivers are invited to participate. If included, participants will be given a onetime virtual assessment, along with caregiver surveys. This study is intended to contribute to the improved characterization of social cognitive skills in individuals with PWS. Compensation for study participation is $100.

If you have questions, email neurodevelopmentreasearchlab@gmail.com or call 216-368-0112

Scan the QR code to express your interest in this study or fill out the form at https://redcap.case.edu/surveys/?s=RJJTAJNEKPCE7FH8

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

Website

http://www.pwsausa.org/

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