Each May, a global community comes together to raise awareness for Prader-Willi syndrome (PWS), a rare and complex genetic disorder that profoundly impacts the lives of individuals and their families. The PWS community comes together to raise awareness, strengthen connections, and drive education campaigns that activate broader support and understanding for those living with PWS.
What is PWS, and Why Awareness Matters
Prader-Willi syndrome (PWS) is a rare genetic disorder caused by the lack of paternally expressed genes on the chromosome 15q11-q13, first identified in 1956 by Swiss doctors Prader, Willi, and Labhart. It affects approximately 1 in every 15,000 babies, making it one of the lesser-known genetic conditions and one of the most misunderstood.
The primary feature of PWS is hyperphagia, a chronic and life-threatening condition characterized by feelings of intense, persistent sensation of hunger accompanied by food preoccupations, and an extreme drive to seek and consume food, which can severely diminish the quality of life for individuals with PWS and their families. Additional characteristics of PWS can include behavioral problems, cognitive disabilities, low muscle tone, short stature (when not treated with growth hormone), the accumulation of excess body fat, developmental delays, and incomplete sexual development.
Approximately 85% of people living with PWS will experience ongoing hyperphagia. Hyperphagia occurs because of a failure of the normal appetite regulatory mechanisms in the hypothalamus, which can lead to increased appetite or food consumption, reduced satiety and a range of disruptive food-related behaviors, including aggressive food seeking.
Individuals with PWS are at risk of suffering significant health and quality of life consequences, including morbid obesity and premature death.
PWS Awareness Month is important because it helps individuals and families affected by this devastating disease find community and support, sometimes for the first time. It can help create spaces for sharing experiences, spreading knowledge about treatment options and available resources, and connecting people to the help they need. By educating the broader public, it also fosters greater understanding, compassion, and support, paving the way for a more inclusive and empowered future for everyone impacted by PWS.
The History of PWS Awareness Month & Day
Thanks to the dedicated efforts of organizations like the Prader-Willi Syndrome Association (PWSA) and the Foundation for Prader-Willi Research (FPWR), May was officially designated as PWS Awareness Month in the early 2000s.
In addition to PWS Awareness Month, May 15th—written as 05.15— is recognized as PWS Awareness Day in the United States, a meaningful nod to chromosome 15, the location where there is a lack of the paternally expressed genes that causes the syndrome. This symbolic date serves as a rallying point for awareness efforts here in America.
Over the years, awareness campaigns have expanded globally, bringing families, advocates, and researchers together in the fight for better understanding, inclusion, and therapies.
Shining a Light: Landmark Light-Ups and Global Support
One of the most visually striking ways the world shows support for PWS Awareness is through landmark light-ups. Iconic structures across continents are illuminated in orange, the chosen color of unity and hope for those affected by PWS.
These light-ups spark media attention, drive public curiosity, and unite the global PWS community under a shared mission. A few of the notable landmarks that have previously participated include:
Spinnaker Tower (Portsmouth, England) | Image: fdcomms.co.uk
Melbourne Star Observation Wheel (Melbourne, Australia): | Image: Gypsy Rose
Belfast Castle (Belfast, Northern Ireland) | Image: fdcomms.co.uk
Battersea Power Station (London, England) | Image: fdcomms.co.uk
Moorish Castle (Gibraltar) | Image: gbc.gi
A major milestone in 2024: New York City’s Times Square featured a billboard dedicated to PWS Awareness, placing this rare disorder in front of millions and elevating its visibility in an iconic way.
How You Can Help
Raising awareness of Prader-Willi syndrome has a ripple effect. It can lead to increased research funding, more inclusive communities, and better support systems for individuals and families. With understanding and advocacy, people with PWS can, and do, lead meaningful, fulfilling lives.
Here’s how you can get involved this May:
- Wear Orange on May 15 to show your support for the PWS community.
- Sign up to stay informed on PWS news.
- Share personal stories, facts, and photos on social media using the hashtags #PWSAwareness, #PWSAwarenessMonth, or #SiblingSpotlight.
- Spread the word by sharing this blog post with your friends, family, and networks.
Join us in working to build a more informed, compassionate world, one that sees, supports, and celebrates those living with Prader-Willi syndrome.
