Category: Awareness

How Utah is Enhancing Food Security for Prader-Willi Syndrome Individuals: 2023 PWS National Convention

Contributed by Christopher Rich, Utah PWS Association Among the exhibitors at this year's PWSA | USA National Convention was the Utah PWS Association, which focused on food security and its role in managing PWS symptoms. The exhibition booth showcased practical strategies and innovative solutions to create a controlled environment, emphasizing the importance of food security...

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!...

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: 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....

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....

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