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.
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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 in partnership with the Endocrine Society and Medscape Education is excited to share a free online continuing...
06/04/2026

PWSA | USA in partnership with the Endocrine Society and Medscape Education is excited to share a free online continuing education activity for endocrinologists, pediatricians, psychiatrists, medical geneticists, primary care physicians, physician assistants, and nurse practitioners in the United States. This activity offers a free 0.50 AMA PRA Category 1 Credit(s)β„’ and helps improve understanding and care for individuals with PWS and their families.

Visit https://www.medscape.org/viewarticle/missing-piece-prader-willi-puzzle-optimizing-transitions-2026a1000b13 to learn more and participate in "The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life."

Are you interested in treatment options for individuals with Prader-Willi syndrome? Check out our Treatments webpage. Th...
06/04/2026

Are you interested in treatment options for individuals with Prader-Willi syndrome? Check out our Treatments webpage. This page provides an overview of commonly discussed treatment options, along with links to additional educational resources and ongoing research efforts. Learn more about VYKATβ„’ XR, the only FDA-approved treatment for hyperphagia, and growth hormone, among the most extensively studied treatments in the PWS population. Here you will also find answers to frequently asked questions about treatments, providers, and how PWSA | USA can support your family. Visit this webpage at https://www.pwsausa.org/pws-treatments/

This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. She spoke wi...
06/02/2026

This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. She spoke with Hannah and Alex Garrick, siblings to John (20, living with PWS). They share a bit about their lives growing up with a sibling with PWS; the neighborhood watch, food security, and how it led them into the careers they have now. Hannah and Alex are open about the aggression they experienced from their brother and how food security was difficult, but also share the love they feel for John, the lessons they have gained from their experiences with him, and the relief and happiness that he is doing so well in his current situation. They talk about the importance of listening, both siblings to their loved one with PWS and parents to the sibling, community involvement for the individual with PWS, and how their family has approached the conversation of guardianship.

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

June is Scoliosis Awareness Month and we're sharing tips with the PWS community on the topic of scoliosis. Scoliosis is ...
06/01/2026

June is Scoliosis Awareness Month and we're sharing tips with the PWS community on the topic of scoliosis. Scoliosis is a common diagnosis with PWS, and individuals should be monitored from a young age. Children with PWS should be encouraged to be as active as possible, particularly those activities that build up their core, strengthen their abdominals and the back muscles. While a quick internet search can help you find core strengthening exercises, these are a few to get you started.

Learn more about scoliosis and PWS athttps://www.pwsausa.org/wp-content/uploads/2022/11/Guidelines-on-Scoliosis-Monitoring-and-Treatment.pdf

πŸ“£ Registration for the 2027 United in Hope National PWS Convention opens in just ONE MONTH - Wednesday, July 1, 2026!Our...
06/01/2026

πŸ“£ Registration for the 2027 United in Hope National PWS Convention opens in just ONE MONTH - Wednesday, July 1, 2026!

Our convention truly has something for everyone:
- Medical & Scientific Conference
- Professional Providers Conference
- Family Conference
- Adults with PWS Conference
- Camps for individuals living with PWS and their siblings

We're also thrilled to welcome back Dr. Jennifer Miller and Michael Tan as speakers for our Family Conference, along with many other amazing speakers and panelists you won't want to miss. Mark your calendars and watch for the registration link on July 1st!

πŸ“… Convention dates: July 14-17, 2027
πŸ“ Convention location: Caribe Royale Orlando | Orlando, FL

We hope you enjoy our 2026 Rare Aware Art Share: Advocacy and Awareness submissions! Check out the gallery and read the ...
05/31/2026

We hope you enjoy our 2026 Rare Aware Art Share: Advocacy and Awareness submissions! Check out the gallery and read the artist's responses at https://www.pwsausa.org/rare-aware-art-share-gallery-2024/

What do you do to advocate for yourself?
"I use my words to tell people what I need in school and home. I also go to Washington, D.C. to advocate for people with PWS and other rare diseases." - Aeden, 17, living with Prader-Willi syndrome

We hope you enjoy our 2026 Rare Aware Art Share: Advocacy and Awareness submissions! Check out the gallery and read the ...
05/31/2026

We hope you enjoy our 2026 Rare Aware Art Share: Advocacy and Awareness submissions! Check out the gallery and read the artist's responses at https://www.pwsausa.org/rare-aware-art-share-gallery-2024/

What do you want people to know about you?
A kind person, caring, and help people be included. I have a strong heart and I love everyone. I like to play basketball, volleyball, hanging with my Kitty boy, and hanging out with my friends and my family, performing in plays and acting, watching other people performing in plays. I have Prader-Willi syndrome. I like to cook and I like to swim in the river and also listening to my favorite singers and hang out with my dogs and my chicks and laying out on the porch in the sun.

Art by Freya, 14, living with Prader-Willi syndrome

Happy PWS Awareness Month! πŸ’™
05/31/2026

Happy PWS Awareness Month! πŸ’™

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

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