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...
Category: Awareness
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...
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...
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...
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...
Tell Your US Senator to Vote Against the Reconciliation for Prescription Drug Pricing Legislation
The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases! The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of...
Soleno Therapeutics Provides DCCR Update, Continued Communications with FDA
PWSA | USA is happy to share the most recent news from Soleno Therapeutics regarding DCCR: This morning, Soleno shared that through continued dialogue with the FDA, the FDA acknowledged the data from a proposed randomized withdrawal phase of Study C602 would have the potential to address its concerns regarding the adequacy of the overall...
A Look into Mainstay Life Services’ Pennsylvania Prader-Willi Group Home
Mainstay Life Services is a provider in Pittsburg, PA that supports individuals with Prader-Willi syndrome (PWS). Currently, Mainstay Life Services has eight group homes and will be opening another home in the near future. All of the homes are licensed under 6400 regulations through the state of PA. According to Jen Dayton, Associate Director of...
Learn How to Communicate with Elected Officials and Stakeholders
Join PWSA | USA for our July Advocacy in Action webinar: Effective Communication with Elected Officials and Stakeholders - A Virtual Roundtable and Panel Discussion When: July 25, 2022 at 2:00PM EST Register in advance here: https://us02web.zoom.us/webinar/register/WN_W4pZ9Q34R3GoO9HdBpmMbg PWSA | USA is excited to bring you this Virtual Roundtable and Panel Discussion on Effective Communication with...
Help PWSA | USA Raise Awareness for the Upcoming D.C. Fly-In by Writing an Op-Ed Piece
There are many ways to raise awareness for a cause you're passionate about but personal stories typically create the biggest buzz and generate the most attention. It's often difficult to find a starting point - how do I get my story out and who do I send it to? We're here to help! Ahead of...