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.

PWSA | USA's 2026 Moms’ Retreat in Park City, UT, is in the books, and our hearts are full. 💙🗻A huge thank you to the mo...
10/19/2026

PWSA | USA's 2026 Moms’ Retreat in Park City, UT, is in the books, and our hearts are full. 💙🗻

A huge thank you to the moms who joined us, our incredible speakers, and our sponsors - Soleno Therapeutics, a Neurocrine Biosciences Company, Aardvark Therapeutics, and PANTHERx Rare Pharmacy - for making this weekend possible.

“The Moms’ Retreat was a chance to step away, take a breath, and spend time with other moms who understand life with Prader-Willi syndrome. From the laughter to the tears and the conversations in between, we hope every mom felt cared for and free to be herself. To each mom who joined us, thank you for sharing your heart and making this time together so special.” - Angela Frazier, PWSA | USA Event Specialist

We’ll share the full event photo gallery soon, and you’ll see more reflections from the weekend on our blog and socials. Stay tuned!

October is National Physical Therapy Month, and we've chosen to focus our Monday Tips on sensory integration. “Sensory i...
10/19/2026

October is National Physical Therapy Month, and we've chosen to focus our Monday Tips on sensory integration.

“Sensory integration is “the organization of sensory input for use.” This system enables the body to synthesize, organize, and process incoming sensory information received from the body and the environment to produce purposeful, goal-directed responses. Sensory dysfunction is the ineffective neurological processing of information received through the senses, causing problems with learning, development, coordination, and behavior.” (From our Therapeutic Interventions booklet by Janice Agarwal: https://www.pwsausa.org/wp-content/uploads/2022/09/Therapeutic-interventions-1-1.pdf)

There are 4 main sensory systems that affect growth and development. This week we're sharing about the tactile system. Read the "Physical Therapy: Sensory Integration" blog at https://www.pwsausa.org/physical-therapy-sensory-integration/

Look what recently popped up in Troy, NY! 👀 Seeing a PWS event on a billboard is a pretty incredible moment for our comm...
10/18/2026

Look what recently popped up in Troy, NY! 👀 Seeing a PWS event on a billboard is a pretty incredible moment for our community, and it also means the cat’s out of the bag...

We’re thrilled to announce that Nashville comedian Brian Bates will be at the 2nd Annual Cocktails for a Cause on Friday, November 13, 2026, at Revolution Hall in Troy, NY, hosted by PWSA | USA CEO Stacy Ward. Brian will treat attendees to an exclusive 20-minute stand-up comedy set!

If you’ve seen Brian before, you know you’re in for a night of nonstop laughs. If you haven’t, trust us, you’ll want to. His humor, storytelling, and real-life perspective are absolutely hilarious.

🎥 Watch his comedy special, Worried, here: https://youtu.be/-LfFqaVj3uQ

🎟️ Get your tickets for Cocktails for a Cause, or show your support if you can’t attend in person: https://give.pwsausa.org/event/cocktails-for-a-cause-a-night-for-prader-willi-syndrome/e791878

10/17/2026

Two days. 100+ residential professionals. One shared mission. 💙

At PWSA | USA’s 2nd Residential Providers Conference, August 20-22 in Savannah, GA, providers from across the country came together to learn, share best practices, and strengthen the network of support for individuals with Prader-Willi syndrome.

Hear from attendees in our recap video as they share their biggest takeaways and how they’ll use what they learned to help their PWS services and programs thrive.

Thank you to our sponsors, speakers, and attendees for making this event so special. We already can't wait for the next one!

It's been an incredibly exciting few weeks for PWSA | USA’s Advocacy Team! From Washington, D.C., to Boston, we’ve been ...
10/16/2026

It's been an incredibly exciting few weeks for PWSA | USA’s Advocacy Team! From Washington, D.C., to Boston, we’ve been working to elevate the voices of individuals and families living with Prader-Willi syndrome (PWS), strengthen partnerships across the rare disease community, and ensure PWS is part of important conversations shaping the future of research, newborn screening, and public health. Learn more about PWSA | USA advocacy at the Global Genes Rare Development Symposium, the RARE Foundation Newborn Screening Bootcamp, the International Conference on Newborn Sequencing (ICoNS) in Boston, Wellesley College, Harvard Medical School, and Boston Children's Hospital at https://www.pwsausa.org/advocacy-in-action-pwsa-usa-on-the-national-stage/

Not every family has experienced equal access to timely diagnosis, quality care, or a seat at the table where decisions ...
10/15/2026

Not every family has experienced equal access to timely diagnosis, quality care, or a seat at the table where decisions are made. The PWSA | USA Equity Committee exists to change that! Check out the committee webpage to learn more about what equity looks like, the work of the committee, and the members involved, along with links to relatable blogs and podcast episodes. Equity recognizes that different communities face unique barriers and therefore requires tailored approaches, redistribution of resources, and the removal of systemic obstacles so that outcomes are not predictable by race, ethnicity, geography, gender identity, sexual orientation, language, disability, or socioeconomic status. Support PWSA | USA's equity work by learning more about our committee.

Visit the webpage at https://www.pwsausa.org/equity-committee/

We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbe...
10/14/2026

We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbee spoke in depth about the early years of Prader-Willi syndrome, hypotonia, and how physical therapy is a critical treatment. With over 30 years of experience, Janice was able to talk about physical therapy with PWS then and now, along with the truly beneficial addition of growth hormone. Abigail shares some of the newer strategies like dynamic movement intervention and Theratog suits. Both ladies offer an array of exercises and activities, along with stressing the importance of trunk support and physical therapy involving daily interactions and activities. This episode is an informative look at physical therapy throughout the PWS journey and full of practical activities families can, and should, do at home.

Listen to this episode on your favorite podcast player or at https://pwsunited.podbean.com/e/physical-therapy-fundamentals-for-pws/
Remember to rate and review while you're there.

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1032 E Brandon Boulevard 4744
Brandon, FL
33511

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