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...
Consider Including PWSA | USA in your Planned Giving
Contributed by Denise Servais, M. Ed, CCC-SLP One way to make a lasting impact and to honor a loved one with Prader-Willi syndrome is by remembering Prader-Willi Syndrome Association | USA in your will or estate plan. Creating a gift in your will or estate, at any level, is a special way to show your...
Residential Placement Opportunity for Adult living with PWS
Information shared with PWSA | USA on behalf of the Evergreen Meadow Adult Foster Care Home: Evergreen Meadow Adult Foster Care Home in Ada, Michigan is anticipating a rare opening in the very near future. We provide a family setting as we live on-site, but are also a State Licensed Family AFC home and hold a...
National Direct Support Professionals Week 2022
National Direct Support Professionals Week is September 11 - 17, 2022. This is a week to recognize and show appreciation for the work of providers who are supporting individuals with developmental and intellectual disabilities to maximize their independence. Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions, including direct...
Harmony Biosciences Recruiting PWS Caregivers, Individuals to Participate in Daytime Sleepiness Interview
On behalf of Harmony Biosciences Patient Advocacy Team: If you are the caregiver of someone diagnosed with Prader-Willi syndrome (PWS) aged 6 to 65 years and who also experiences daytime sleepiness, you and your care recipient may qualify for a 60-minute interview that will reimburse you $115 for your participation. We want to hear about...
PWSA | USA Receives Support from The Giving Pump
PWSA | USA is honored to be recognized as a charity beneficiary of The Giving Pump! For those in our community who live in the Yonkers area of New York, we encourage you to fill up your tank at the Shell Gas station located at 1 Enterprise Blvd., Yonkers, NY. Through October 31st, a portion...
A Look into The Arc of Alachua County’s Prader-Willi Group Home
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW The Arc of Alachua County, located in Gainesville Florida, currently operates ten group homes that specialize in serving adults with PWS. These group homes are licensed by The Agency for Persons with Disabilities (APD). ADP oversees and funds Home and Community Based...
Save the Date: PWSA | USA’s Virtual Sleep Summit
To learn more about sleep issues in individuals living with PWS, PWSA | USA created a six-month program entitled Sleep Issues in Prader-Willi Syndrome: A Deep Dive for Parents & Practitioners, which included monthly focus group discussions led by a trained facilitator. The program will conclude with a full day PWSA | USA Virtual Sleep...
Radius Health Releases Helpful Resources for SCOUT-015 Trial
In an effort to help our PWS community better understand its SCOUT-015 trial, Radius Health has released several resources about the process of the study, trial sites, and about their drug RAD011 a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. Click on...