Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64). When asked...
Category: Awareness
Congratulations to PWSA | USA’s 2023 Volunteer Award Recipients
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead On June 24, 2023, the last day of PWSA | USA’s 37th National Convention, seven individuals who have gone above and beyond to not only spread the mission of PWSA...
Support PWSA | USA During Kendra Scott’s PWS Awareness Month Giveback!
To close out a memorable and historic PWS Awareness Month, PWSA | USA is partnering with Kendra Scott for one final awareness celebration! The jewelry company will host a PWS Awareness Month Giveback event on Saturday, May 27, 2023, from 12:00 - 2:00 p.m. EST to support PWSA | USA's advocacy, family support, and research...
Better Speech and Hearing Month
The month of May is recognized as Better Speech and Hearing Month to bring awareness to the many speech, language, swallowing and hearing disorders among children and adults. Individuals with PWS often present with a variety of clinical features that may impact their speech and language development (Lewis, 2023) including reduced articulation, hypernasality or hypo...
A Historic Milestone for the PWS Community: PWSA | USA Receives Joint Congressional Support to Declare May 15th as National PWS Awareness Day
Today, May 15th, our PWS community has something new to celebrate! PWSA | USA is excited to announce U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL) have filed a joint resolution declaring May 15, 2023, and every May 15th thereafter, Prader-Willi Syndrome (PWS) Awareness Day in the United States of America!...
How to Request a Proclamation or Resolution for PWS Awareness Month
Contributed by Dorothea Lantz One great way to help raise awareness for PWS during the month of May is to request a proclamation or resolution from your local and/or state government. A proclamation is an official designation of an event. Proclamations are created to help educate the public about a certain topic, in this case...
Introducing PWSA | USA’s ECHO® 4 PWS Healthcare Provider Series
PWSA | USA is excited to announce the launch of our new Healthcare Provider Project ECHO Series on May 16, 2023, at 5:00 p.m. CST. We are proud to offer this opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO®...
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...
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...
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....
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...
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...
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...
Spreading the Love for PWS
PWS sibling Austin, 14, has been using his new entrepreneurial skills to raise money for PWSA | USA and awareness for our rare disease community in honor of his sister Lola. How? By making and selling jam! Read below to find out how Austin came up with this idea, how much he has raised so...
Self-Care for Caregivers
Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too. November is recognized as National Family Caregiver Month....
PWSA | USA to Host FDA Sponsored Program at 37th National Convention
Join us for an Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD) at PWSA | USA's 37th National Convention, June 21-24, 2023! This is an FDA program and the first for our PWS community! On Thursday, June 22, 2023, in conjunction with our PWSA | USA National Convention in Orlando, Florida, PWSA | USA will host an...
Denver Broncos Player Spotlights PWSA | USA in NFL’s ‘My Cause My Cleats’ Campaign
As part of the NFL’s Annual ‘My Cause My Cleats’ campaign, Denver Broncos Safety Caden Sterns selected PWSA | USA as one of his charitable causes! My Cause My Cleats celebrates the positive impact that players have made in communities across America and provides players with an opportunity to highlight the cause-related work they are...
Share Hope + Take Action During PWSA | USA’s 2022 Angel Drive Campaign!
It has been said that each of us needs just three things to be truly happy in this world: someone to LOVE, something to HOPE for, and something to DO. Together with our Prader-Willi syndrome community near and far, our mission requires all three. WE LOVE: They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients,...