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...
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...
Participate in a PWS Parent, Caregiver Self-Care Survey
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...