May is Prader-Willi Syndrome Awareness Month

May 30, 2023

May is Prader-Willi Syndrome Awareness Month

By Gerri Russell, Associate Director of Residential Services

Each May at Mainstay Life Services, we celebrate Prader-Willi Syndrome Awareness Month. I’d like to share how we have learned, celebrated, and taken action this month.

Prader-Willi Syndrome (PWS) is a rare condition – there are fewer than 50,000 people in the United States who live with PWS (this calculated to being less than .01% of the population). People living with PWS have insatiable hunger and do not have the capability to stop eating; uncontrolled PWS can lead to excessive eating and life-threatening obesity. In some cases, uncontrolled PWS can result in death. While there is no cure for PWS, people with PWS can live their best life with support and services that help them to manage it.

At Mainstay, we are supporting 14 people with PWS; 11 of the people are living in eight (8) of our community homes that are designed to best support them. Three (3) of the people we support with PWS have jobs. Mainstay is proud to be the only regional provider that specializes in PWS services. We continue to develop and formalize our program model to make it replicable so more people in more places who are living with PWS can live their best life as they choose.

This year during May, we have built awareness and celebrated with our employees and the people we work for by:

• Hosting a walk at a nearby park for all Mainstay. At the walk we distributed orange hats and bracelets. (Orange represents PWS awareness.)
• We ran a staff awareness campaign – asking team members to try a few activities for two weeks that people with PWS do every day. These were:
  • Eat out or order takeout once. The people we support with PWS eat out only once per month.
  • Eat three meals and two snacks each day.
  • Exercise two times each day for 45 minutes OR three times each day for 30 minutes.

These challenges were just that – challenging. And they built an awareness and a greater appreciation for the perseverance and commitment to personal wellbeing of the people we work for who live with PWS.

Mainstay is pleased to have recently launched a new job posting (and rate) for the staff members supporting people with PWS. We are seeking candidates with at least one year of experience working with adults with Intellectual Disabilities and Autism and/or PWS, or who are working toward or hold a bachelor’s degree in social work or a related field. As of this writing, Enhanced Community Living Specialist opportunities are available! Find out more: Careers Page

As May ends, several Mainstay representatives are looking ahead to attending the National PWS Convention in Orlando in June! We are also pleased to be a sponsor for this important event as we continue to gain recognition for our PWS program.

To learn more about PWS, visit:

https://rarediseases.info.nih.gov/diseases/5575/prader-willi-syndrome/living
https://www.pwsausa.org/
https://www.fpwr.org/