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...
Fundraising Spotlight: AXES FOR HOPE
We are excited to share the upcoming Hope United fundraiser in New Mexico, benefitting PWSA | USA, AXES FOR HOPE! This great event is hosted by PWS parents and PWSA | USA parent mentors Jonathan and Maggie Andrews in New Mexico. Event Details When: Sunday, May 28, 2023 from 12:00 – 5:00 p.m. Where: ABQ Ax...
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!...
Harmony Biosciences to Share New Pitolisant Data at “SLEEP 2023” Annual Meeting
PWSA | USA received information from Harmony Biosciences that the company will share new safety and efficacy data for its drug WAKIX (Pitolisant) at the "SLEEP 2023" Annual Meeting, June 3-7, 2023 in Indianapolis, IN. WAKIX is an FDA approved drug used to treat excessive daytime sleepiness or cataplexy in adult patients with narcolepsy. Below,...
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®...
Remembering the Life and Impact of Ken Smith
Kenneth (Ken) Smith, 62, of Sarasota, FL, died peacefully on March 7, 2023, at Tidewell Hospice House with his life partner, Patty LaRoche, by his side. He is also survived by his mother and stepfather, Wilma and Clinton Beauford of Pittsburgh, and his sister, Kathy Smith. Ken was preceded in death by his father, Roland...
Creating a Parent Input Statement for Your Child’s IEP
Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best and your input into the development of their Individual Education Program (IEP) is crucial. In addition to actively participating in discussions, goal development, and progress monitoring, creating a parent input statement that is incorporated into...
Support PWS Families During PWSA | USA’s 2023 Family Support Campaign!
Today, as we work together to ensure that every member of our Prader-Willi syndrome community has access to the support, expertise, and resources needed to help our loved ones thrive, we need your help! Whether you have just begun your PWS journey or are well along your way, join us to help ensure PWSA |...
Harmony Biosciences Shares Statement Regarding Narcolepsy Drug WAKIX
In response to yesterday’s news from Scorpion Capital regarding Harmony Biosciences, we have received the below community-facing statement. Harmony Biosciences shares information about the company’s drug WAKIX, which is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. If you have questions, please reach out to info@pwsausa.org. —————————————————————————- On behalf of...
Nominations Now Being Accepted for PWSA | USA’s 2023 Volunteer Awards
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? Volunteer Appreciation Award nominations are now being accepted through Sunday, April 30, 2023 for the following awards: 2023 Advocacy in Action Star - This...