The Chicago School of Professional Psychology is asking parents and caregivers in the PWS community to participate in a brief survey to investigate challenges that parents have when completing daily self-care skills with their child with PWS. This survey is for parents and caregivers with a child between the ages of 12-25 living with PWS....
Advocacy in Action Webinar: Arizona State Qualifier Campaign
When: February 16, 2023 at 8:00 p.m. EST Register TODAY for PWSA | USA's free February Advocacy in Action webinar, where several PWSA Arizona Chapter leaders will discuss the Arizona State Qualifier Campaign. PWS is only recognized in 14 States as an automatic qualifying condition. Join us as we bring you the leaders of our...
Calling all PWS Parents, Siblings, Grandparents, and Caregivers: Send in Your Messages of Hope
PWSA | USA's Family Support Team is asking the PWS community to share Messages of Hope that will be featured in our enhanced New Diagnosis Package. This important publication will be sent to new families who receive a PWS diagnosis. It is our hope that your messages will encourage families to see past the diagnosis...
Donor Spotlight: Sujeiri Colon
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
Save the Date: 2023 Clint Hurdle Hot Stove Dinner
Tickets for the 2023 Clint Hurdle Hot Stove Dinner (March 25, 2023) will be available for purchase on Tuesday, January 17, 2023! SAVE THE DATE for the 2023 Clint Hurdle Hot Stove Dinner, which will take place Saturday, March 25, 2023. Sip, savor, and support Prader-Willli Syndrome Association | USA while enjoying this outdoor event...
Calling All PWS Caregivers!
The Chicago School of Professional Psychology is looking for PWS caregivers to participate in a asynchronous computer training on medication and data collection procedures. Upon completion, you will be entered to win a $50 Amazon gift card! Click the button below to learn more about this opportunity and to find the training link. Thank you!
Happy Holidays from PWSA | USA!
With the start of a new year just around the corner, we want to take this opportunity to share a heartfelt thank you to everyone in our community and to those who have supported PWSA | USA. We have several accomplishments to celebrate from this past year, including: Hosting our first Volunteer Summit and giving 30...
Thank You PWS Community for your Advocacy Efforts in 2022!
As we wrap up 2022, we want to recognize the amazing advocacy efforts our community helped us carry out over the past year. Your support, involvement, and VOICE led to many accomplishments, including taking our advocacy efforts to new heights (literally) and laid the foundation for more incredible work to continue in 2023. PWSA |...
Get to Know PWSA | USA’s Educational Training Opportunities
PWSA | USA's Family Support team has been hard at work conducting trainings around the country, both virtually and in-person, to assist those who support individuals affected by Prader-Willi syndrome (PWS). In 2022 alone, our Family Support Director Stacy Ward, MS and Alterman Family Support Counselor Kim Tula, MS, CSW gave 18 trainings to school...
PWSA | USA 2023 Convention Registration is NOW OPEN!
Registration is NOW OPEN for PWSA | USA’s 37th National Convention! We invite you to join us June 21 – June 24, 2023, in sunny Orlando, Florida at the Hilton Orlando Buena Vista Palace. PWSA | USA’s Convention will provide exciting opportunities to learn, connect (and reconnect), and hear about the latest PWS research. This...
Global PWS Registry Shares Data on Living Situations for Individuals Affected by PWS
Announcement from PWS Global Registry: See infographic with visual data below. ----------------------------------------------------------------------------------------- As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registry...
Harold J.P. van Bosse, MD FAAOS, Joins Orthopedics Team at SSM Health Cardinal Glennon Children’s Hospital in St. Louis, MO
PWSA | USA has been informed that Harold J.P. van Bosse, MD FAAOS, joined the Orthopedics team at SSM Health/Saint Louis University/Cardinal Glennon Children's Hospital in St. Louis, MO. "I look forward to continuing my work with patients and families of children with Prader-Willi syndrome," said Dr. van Bosse. If you are interested in scheduling...