Help us honor our PWSA | USA volunteers! Do you know someone who deserves to be recognized for their service and dedication to PWSA | USA's mission and the PWS community? 2023 Volunteer Appreciation Award nominations are now being accepted through Sunday, April 30, 2023. PWSA | USA will give out six awards this year:...
Convention Spotlight: Julie Casey
We are excited to come together again in-person for the 37th PWSA | USA National Convention, June 21-24, 2023 in Orlando, FL! Leading up to this much-anticipated event, members of our PWS community are sharing their Convention memories and why it’s beneficial for others to attend! Below, PWS parent Julie Casey gives details about her...
Sharing Our Rare: Sheri & Lyra
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
Sleep Disturbances in Prader-Willi Syndrome
Contributed by Lynn Garrick, RN Sleep health is essential for everyone. It is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep...
Residential Spotlight: Abilities Midwest in Wisconsin
Written by Kim Tula, MS, CSW Abilities Midwest is an adult residential provider in Wisconsin that only serves individuals diagnosed with Prader-Willi syndrome (PWS). They currently operate three PWS-specific group homes: One in River Falls, WI and two in Watertown, WI. All of these homes are licensed through the state of Wisconsin as an Adult...
Sharing Our Rare: Leslie and Corey Fuller
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
Sharing Our Rare: Sue Colon
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
PWSA | USA Accepting Convention 2023 Scholarship Applications
Thanks to the generosity of an anonymous donor, PWSA | USA is offering scholarships for our upcoming 2023 National Convention, June 21-24, 2023, in Orlando, FL. Guidelines for submitting a scholarship application are as followed: You must be a first-time PWSA | USA National Convention attendee Scholarship funds can be applied toward a Conference registration,...
Creating Your Child’s Education File
Have you ever walked away from an Individualized Education Program (IEP) meeting and thought to yourself, “That’s not what they told me during the last meeting” or, “Why are we having the same discussions each meeting? This is a waste of time.” Having an organized file that encompasses all documents regarding your child’s education will...
Your Voice Matters: Attend the FDA’s Externally-Led Patient-Focused Drug Development Meeting at PWSA | USA’s 37th National Convention
In an effort to bring together the PWS patient voice, PWSA | USA, IPWSO and FPWR are excited to host the first FDA Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Prader-Willi syndrome community. You won't want to miss this impactful event at PWSA | USA's 37th National Convention, June 21-24, 2023, in Orlando,...
Call for Volunteer Treasurer!
We know that many of you want to make a difference in the lives of members of our PWS Community – and we have the perfect opportunity if you, or one of your family or friends, are a CPA. Our fabulous treasurer is retiring in March after many years of excellent service to our association....
Do You Have Questions About the 37th National Convention? We Have the Answers!
Join with several members of PWSA | USA's staff Tuesday, February 21, 2023 at 8:00 p.m. EST to learn the ins and outs of our 37th National Convention! We are excited to share more details and answer questions about this year's Convention events, speakers, opportunities for families, caregivers, and health professionals, and how you can...