Prader-Willi Syndrome Awareness Month (May 2023)

It’s expensive to raise a child with special needs, which people don’t even think about. Emotionally it can be a struggle, but financially it’s really rough.

Elena Delle Donne

Like many syndromes and disorders, they’re hard to prevent, difficult to diagnose at an early age, and generally have no cure. Prader-Willi Syndrome is one of those disorders. Because it can happen in any family, it affects about one in 12,000 to 15,000 people each year in the United States alone. Prader-Willi Syndrome Awareness Month is a holiday dedicated to informing people about this condition to help families out there in need of answers.

History of Prader-Willi Syndrome Awareness Month

Prader Willi Syndrome was discovered and first diagnosed in 1956 by Swiss doctors Andrea Prader, Alexis Labhart, and Heinrich Willi. After they observed nine children with common characteristics, such as small hands and feet, weak muscles from birth, intellectual disabilities, on-set childhood obesity, and constant hunger, they were able to determine that thee symptoms were caused by a disorder that wasn’t named yet.

Today, doctors can determine this syndrome through genetic testing, as they have now found that this syndrome is caused by an abnormality of chromosome 15, which results in the dysfunction of the hypothalamus, or the part of the brain that controls functions such as hunger, emotions, fertility, and body temperature.

Prader-Willi is part of a spectrum, similar to Autism and ADHD, which means infants and children could have a varying degree of symptoms and be misdiagnosed as a result. As more research became relevant, the holiday itself began to form. In 2009, representatives Ed Royce and Jane Harman introduced the holiday to the House of Representatives in the United States.

From there, it passed as an official month-long holiday to be observed. Organizations such as the Foundation for Prader-Willi research and the Prader Willi Syndrome Association now sponsor the holiday as one of their main events for fundraisers and contests, where the money collected will go towards research to help families manage and treat the disorder.

How to celebrate Prader-Willi Syndrome Awareness Month

If you feel strongly about this cause, one of the best places to go for resources and information is to visit websites for organizations such as the Prader Willi Syndrome Association or the Foundation for Prader-Willi research and donate money towards their cause. Share this holiday on social media using the hashtag #praderwillisyndromeawarenessmonth and help inform people about what this syndrome is, how common is it, and how other people can help raise awareness.