May is Prader-Willi Syndrome Awareness Month

Lindsay and Zach are thriving and living their best lives in the community!

By Jen Dayton

Associate Director of Prader-Willi Syndrome Services

Every year during the month of May, Mainstay has an opportunity to shine a light on one of its specialized programs that is supporting people who are living with a rare condition called Prader-Willi Syndrome (PWS). This month is PWS Awareness Month and throughout May we will be providing information about this very rare disorder, challenging you to try a few days following a fitness regimen of someone living with PWS, and sharing stories of people who are living their best life. Please follow Mainstay on Facebook, Twitter, and Instagram throughout the month (and all year) to learn, celebrate success, and be challenged.

Mainstay has supported people diagnosed with PWS since 2000, and as part of our strategic efforts, we are focusing on expanding our services and the number of people who receive our specialized supports. By incorporating behavioral supports, employment services, and serving people where they need and want to be served in the community, we have seen an improvement in the quality of life for the people we work for.

To help us, our team has worked diligently to build partnerships with other PWS experts so we have the most up to date trainings for staff members and we can develop a continuum of support that will meet each person’s needs, wherever they may be in life. We are proud of our past and eager for the future of Mainstay’s PWS supports.

What is Prader-Willi Syndrome?
Prader-Willi Syndrome (PWS) is a variable and complex genetic neurobehavioral disorder resulting from abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates range from 1:15,000 to 1:25,000.

PWS typically causes low muscle tone, short stature if not treated with growth hormone, cognitive deficits, incomplete sexual development, problem behaviors, and a chronic feeling of hunger which, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.

PWS is rare and many have not heard of it. There are very few medical specialists familiar with PWS. (Source: https://www.pwsausa.org/what-is-prader-willi-syndrome/)

I am proud to serve on the Prader-Willi Syndrome Association USA’s provider workgroup and engage with my colleagues from around the country (and world) to share and learn to ensure that Mainstay’s PWS program remains a leader in the field.

What is Mainstay doing during May to recognize Prader-Willi Syndrome Awareness Month?
To build awareness about PWS we invite you to engage with us throughout the month of May. Through our social media channels, we will be sharing information about fitness and its importance in the lives of the people we support who are living with PWS. We will include fitness challenges which will provide you with a sense of the stamina and motivation that people living with PWS need in order to control and maintain their weight and a healthy life. We will also highlight the services Mainstay provides and how these are helping people to build an everyday life. At the end of each week, we will spotlight one of the individuals we support and invite them to share their stories.

At Mainstay, we are extremely lucky to have dedicated, open minded, and supportive staff, and we are even luckier to have the opportunity to touch the lives of the people we work for who are living with Prader-Willi Syndrome. If you have any questions, or are interested in joining our team, please feel free to contact me!

Jen Dayton is Mainstay’s Associate Director of Prader-Willi Syndrome Services. You can reach Jen at jdayton@mainstaylifeservices.org or 412.344.3640 ext. 307.