With monthly donations from caring supporters like you, we can do more good every day. We are looking for 23 people to kick-off 2023 with more HOPE. Simply sign up as a PWSA | USA recurring donor on Facebook at the button below, and your gifts will be matched by the social media platform. Here...
Help us Make an Impact on Giving Tuesday
Are you planning to make a year-end gift? Giving Tuesday, which falls on November 29th this year, is the perfect opportunity to show your support! Thanks to the generosity of a group of anonymous donors, your Giving Tuesday donation and any donations made to PWSA | USA's Angel Drive through December 31, 2022, will...
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....
Celebrate the Season of Giving by Becoming a PWSA | USA Selfless Elf
Be a PWSA | USA Selfless Elf this holiday season and give the gift of Hope and Support to PWS families! Tell your family and friends that taking action for PWS is at the very top of your holiday wish list. Click the button below to sign up as a Selfless Elf, and start encouraging...
PWSA | USA Receives Donation from Burlington Stores Foundation
PWSA | USA is pleased to announce a donation from the private non-profit organization, Burlington Stores Foundation, made possible by Burlington Stores, the national off-price retailer. The Foundation focuses on providing funds to qualifying non-profit 501(c)(3) organizations that are solely nominated by Burlington employees nationwide. We are excited to use this grant to support our...
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...
Operation Holiday Cheer Applications Now Being Accepted
Due to the generosity of an anonymous donor’s gift, PWSA | USA is able to bring holiday cheer to families in need this holiday season! We will identify a select number of families to receive gift cards to be used to help ease the financial stresses of the holidays. To be considered, please fill out...
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,...
Harmony Biosciences Encouraged by New Data in Pitolisant Phase 2 Study
This morning, PWSA | USA received new information from Harmony Biosciences regarding its Phase 2 study of pitolisant. This study's purpose is to evaluate the safety and efficacy of the drug in patients with Prader-Willi syndrome (PWS). The company shared the following community-facing statement: "Today, Harmony Biosciences announced topline data on the primary outcome, excessive...
It’s Flu and RSV Season – How to Protect Your Child
Contributed by PWSA | USA's Family Support Team The Centers for Disease Control and Prevention (CDC) has shown an increase in Respiratory Syncytial Virus (RSV) infections in multiple areas of the US https://www.cdc.gov/rsv/index.html. RSV infection can cause a variety of respiratory illnesses in infants and young children. It most commonly causes a cold-like illness but...
13th Annual Hunter Lens Golf Tournament
PWSA | USA Board of Directors member John Lens hosted the 13th Annual Hunter Lens Golf Tournament alongside his family on October 1, 2022 in support of the organization and in honor of his son, Hunter, who is living with PWS. "On October 1st, the we hosted our 13th annual Hunter Lens PWSA Golf Event...
2nd Annual Answers for Audrey
We want to share a heartfelt thank you to Michelle Spring and her family for hosting their 2nd Annual Answers for Audrey Trivia Night in support of PWSA | USA and in honor of Michelle's daughter, Audrey, who is living with PWS. "We held our 2nd annual (Trivia) Answers for Audrey and it was a...
Calling All PWS Caregivers: Participate in a Toilet Training Survey
Sent on behalf of Kasey Bedard, PhD, BCBA-D Do you have experience toilet training your child with PWS? We need your help! We are recruiting for a survey study investigating the stressors and challenges of toilet training children with PWS. If you are at least 18 years of age, a caregiver of a child with...
Calling All PWS Caregivers: Participate in a Skin Picking Survey
Does your child living with PWS skin-pick? Sent on behalf of Kasey Bedard, PhD, BCBA-D Join a study evaluating the impact of a behavior-analytic caregiver training program on skin-picking in children with Prader-Willi Syndrome. Participation is fully remote. Training will take place across eight weeks, for 1-2 hour per week. All sessions will be recorded....
Free Pilates Sessions for PWS Families in Nevada
Could your loved one living with PWS benefit from more movement in their life? PWS parent and Pilates Teacher, Joakim Valsinger is offering FREE Pilates sessions for families living in Nevada, more specifically the Henderson/Las Vegas area, on Monday, October 17, 2022. Joakim says he has used his skills as a Pilates Teacher to help...
PWSA | USA Announces Keynote Speaker for 2023 National Convention
We are excited to announce the Keynote Speaker for PWSA | USA's 2023 National Convention, Cristol Barrett O’Loughlin who is is the Founder and CEO of A ANGEL AID CARES (Nonprofit Group Enriching Lives, Inc.) You won't want to miss her motivational and inspirational message! Cristol's Keynote speech title is Caring for the Caregivers: From brokenhearted to belonging...
Share Your Halloween Tips + Tricks!
We need YOUR help! Please share what you have done for your loved one living with PWS over the years as alternative options or unique traditions on Halloween. Fill out the form below to share a story from a past Halloween and/or a tip for other families that you have found to be successful. Thank...
Learn About PWSA | USA’s Newest Resource – Your PWS Financial Guide
When: Tuesday, October 11, 2022 at 8:00 p.m. EST Topic: Rare(ly) Missed Opportunities: Your PWS Financial Guide Join us Tuesday, October 11th at 8:00 p.m. EST to learn about PWSA | USA's newest initiative "Rare(ly) Missed Opportunities: Your PWS Financial Guide." During this free interactive webinar, we will walk you through navigating our newest web-based...
Soleno Therapeutics Announces Start of Randomized Withdrawal Study for PWS Drug DCCR
On Monday, October 3, 2022, PWSA | USA received the news that Soleno Therapeutics will begin its randomized withdrawal study for the drug DCCR, which is being studied as a treatment for Prader-Willi syndrome (PWS). This is a promising next step in Soleno's C602 clinical trial. Soleno shared this randomized withdrawal period will only affect...
Radius Health to Close its RAD011 Clinical Trial
PWSA | USA received the news that Radius Health has decided to end its phase 2/3 clinical trial to evaluate RAD011 as a potential treatment for Prader-Willi syndrome (PWS). Radius was recently purchased by Gurnet Point Capital, who shared it will begin winding down the SCOUT-015 study throughout the month of October. On behalf of...
Recognizing Sleep-Related Symptoms of PWS
World Narcolepsy Day is recognized each year on September 22nd. Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects about one in 2,000 people. Continued research suggests that children and adults with PWS experience sleep disorders including chronic insomnia and narcolepsy with cataplexy to a greater...
A Look into Camelot Society’s Group Home
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW Camelot Society is an adult residential provider in the State of Washington that serves individuals diagnosed with Prader-Willi Syndrome (PWS). They currently operate one Group Training Home (GTH) and eight Supported Living (SL) homes. Group training homes are community-based, residential facilities that...