At InCommunity, we believe that awareness is the first step toward understanding, inclusion, and meaningful support. This May, we’re proud to recognize Prader-Willi Syndrome (PWS) Awareness Month, and on May 15th, PWS Awareness Day, we stand with individuals and families affected by this rare and complex condition.

What is Prader-Willi Syndrome?

Prader-Willi Syndrome is a rare genetic disorder caused by the loss of function in specific genes on chromosome 15. Though it affects a small portion of the population, its impact is wide-reaching and lifelong.

PWS presents a variety of challenges, including:

Low muscle tone (hypotonia), often noticeable at birth
Many newborns with PWS have weak muscle tone, which can delay early developmental milestones.
Developmental delays
Children may experience delays in learning to sit, walk, talk, and develop independence.
Chronic hunger (hyperphagia)
One of the hallmark features of PWS is an unrelenting sense of hunger, which can lead to dangerous weight gain without careful management.
Learning and behavioral challenges
Many individuals face cognitive difficulties, emotional regulation issues, and behavioral struggles that require specialized care and support.

PWS: More Than Just Food

While hyperphagia is widely known, PWS affects much more than appetite. The condition also involves hormonal imbalances, sleep disturbances, scoliosis, and other health concerns that require comprehensive, ongoing care.

The Importance of Awareness

There is currently no cure for Prader-Willi Syndrome. But with early diagnosis, tailored therapies, consistent support, and strong advocacy, individuals with PWS can lead full and meaningful lives.

Raising awareness plays a critical role in:

Educating healthcare professionals, educators, and the public
Increasing funding for vital research
Expanding access to resources and services for families
Reducing stigma and fostering inclusive communities

How You Can Help

We invite our community to:

Learn more about PWS and its impact.
Share information to help raise awareness.
Support research and organizations dedicated to improving the lives of those affected.
Advocate for inclusive policies and services.

Standing Together

At InCommunity, we believe that no one should face the challenges of PWS alone. This month and every month, we are committed to promoting awareness, providing support, and advocating for meaningful change.

Awareness leads to understanding - and understanding leads to better lives.

Watch this short video to learn more and hear directly from one of our individuals, Shawn - living with PWS:

May is Prader-Willi Syndrome Awareness Month: Join Us in Supporting the PWS Community