Prader-Willi Syndrome Association USA

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Prader-Willi Syndrome Association USA

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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.

10/30/2026

The PWS Moms' Retreat in Park City, UT, was a wonderful opportunity for 100 moms of loved ones with PWS to come together for laughter, tears, comfort, support, and connection. Nestled amongst the beautiful Wasatch mountains, some moms relaxed by the terrace fire pits, some explored the quaint coffee shops and artisanal stores of the old mining town, and others hiked off into the hills for some exercise and stunning views. All came together for mindfulness, sharing, journaling, art, delicious food, w**e tasting, and authentic connections.

We are honored by the trust these women put in us to support them in their time away from family and responsibilities deferred. We asked moms to fill in the sentence, "I came her feeling _____, I'm leaving here feeling _____." Read their responses at https://www.pwsausa.org/pws-moms-retreat-an-uplifting-pause/

10/29/2026

How does your family find care for your loved one with PWS? PWSA's Clinician Workforce Development department wants to know where families get PWS care, how far they travel, and which providers are hardest to find.

If you care for someone with PWS in the U.S., this 12-question questionnaire takes about 5 minutes. Your answers are anonymous.

Take the questionnaire at https://app.smartsheet.com/b/form/01a178ae70207a33900e6f50f688ef8f

*Please only fill this out once.

10/29/2026

New Resource!

As knowledge, treatment options, support, and awareness of Prader-Willi syndrome continues to grow, our loved ones with PWS are living longer and fuller lives. PWSA | USA, in collaboration with Latham Centers and residential providers throughout the country, has created an extensive guide to help caregivers provide appropriate supports to individuals with PWS as they age. This new resource, "Caregiver Priorities for Aging in Prader-Willi Syndrome," created from years of experience, and countless deep conversations, is designed to better prepare caregivers working with someone diagnosed with PWS; a “cheat sheet” curated by those with first-hand experience. With topics ranging from dental health and aging and nutrition to employment and retirement and end of life care, this booklet thoroughly covers the issues facing adults with PWS.

Download this resource athttps://www.pwsausa.org/wp-content/uploads/2026/10/PWS-Aging-Booklet-2026.pdf

10/28/2026

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

10/27/2026

October 16 and 17, 100 moms from the PWS community gathered in Park City, UT for our PWSA | USA Moms Retreat. It was a chance to step away, take a breath, and spend time with other moms who understand life with Prader-Willi Syndrome. Some moms got to hug old friends, and many made new ones. There was mindfulness, connection, journaling and art activities, delicious food, w**e tasting, and time well spent around the fire, all with the beautiful back drop of the stunning Wasatch Mountains. This episode shares the voices of some of the moms who attended the retreat, what they enjoyed about it, and the supports they had in place to be there. We know that not everyone mom can step away for a few days at a time, but we hope this episode is a reminder on the importance of community and finding people who understand. Whether or not you attended retreat, you belong here.

Listen to this episode on your favorite podcast app or at https://pwsunited.podbean.com/

10/26/2026

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 oral-motor system. Read the "Physical Therapy: Sensory Integration" blog at https://www.pwsausa.org/physical-therapy-sensory-integration/

10/24/2026

We are grateful for the opportunity to have hosted 100 moms of loved ones with PWS for an incredible retreat in Park City, Utah. Thank you to the moms who came, who trusted us with their precious time away from family, who shared their hearts, and offered support and connection to other moms. You are what make this community so beautiful!

Thank you for sharing your space with us and being wonderful hosts.
And thank you to our sponsors Soleno Therapeutics, a Neurocrine Biosciences Company, Aardvark Therapeutics, and PANTHERx Rare Pharmacy.

10/23/2026

October is National Bullying Prevention Month. One of the frustrating and sad realities of our society is that individuals with disabilities and special needs are more likely to be bullied, including our loved ones with PWS. So how can we, as parents and caregivers, help our loved one navigate these potential experiences? One parent shares her experience, offering tips on how to recognize bullying, intervening, and support your loved one. This blog is a reshare from last year, but the tips are hopefully just as helpful.

Read this blog at https://www.pwsausa.org/intervening-with-a-bully-one-familys-experience/

10/23/2026

Exciting clinical trials news for the PWS community! The FDA has lifted the clinical hold on ARD-101, Aardvark Therapeutics’ investigational treatment for hyperphagia in Prader-Willi syndrome.

According to their press release announcement, Aardvark plans to resume clinical development of ARD-101 in patients with PWS following additional anticipated engagement and alignment with the FDA on the Phase 3 trial design.

Aardvark is hosting a webcast tomorrow, October 23, at 8:00 AM ET to discuss the update and data from the HERO trial. It’s designed mainly for the investment community, but PWS families are welcome to join or watch the replay. Find details on the Events page of Aardvark’s Investor Relations website: https://ir.aardvarktherapeutics.com/news-events/events

Read Aardvark's full press release: https://ir.aardvarktherapeutics.com/news-releases/news-release-details/aardvark-therapeutics-announces-fda-has-lifted-clinical-hold-ard

10/22/2026

Participating in the Global PWS Registry is a fantastic way to help inform PWS research and care. The registry is looking for caregivers of children with PWS who are 5-years-old and younger, to answer the question, "What do you wish your care team had known when your baby was born?" If your loved one is 5 and younger, please log in (or create an account if you haven't yet) at https://pwsregistry.org/
Thank you for helping shape care and support in our PWS community!

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

Website

http://www.pwsausa.org/

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