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...
Enjoy Summer with this List of Fun Activities!
Summer vacation has begun for many students throughout the country. Parents and caregivers are challenged with taking advantage of warmer weather and more daylight while still maintaining the level of structure and routine their loved one with Prader-Willi syndrome needs. For some people, coming up with fun activities is a stressor. PWSA | USA has...
PWSA | USA Advocacy in Action: Spotlight on Capitol Hill
Representing PWSA | USA and their loved ones with Prader-Willi syndrome, our Community Engagement Specialist, Dorothea Lantz, and one of our amazing advocates from Virginia, Charles Conway, together with their families in tow, joined Patients Rising Now and more than 60 caregivers and patients with chronic and life-threatening illnesses from across the nation this past...
READ: Delores Baker Shares Daughter, Lindsay’s, Success in 2022 Special Olympics Debut
Lindsay Baker, 31, who is living with Prader-Willi syndrome, made a splash at the 2022 Special Olympic Games in Orlando, FL by competing in and medaling in not one, but TWO swimming events! PWSA | USA had the opportunity to speak with Lindsay's mom, Delores, who shared her daughter's incredible journey from birth and her...
PWSA | USA Family Support Team Shares Tips to Stay Cool During the Hot Summer Months
As the weather warms up and we see a few extra hours of daylight, spending time with your family, having fun, and de-stressing is a must do. Whether you are hiking near a waterfall, camping in your backyard, riding bikes through your neighborhood, or running through the sprinkler, doing it together as a family will...
Family Support Spotlight: “They Always Made Me Feel Like There is Hope”
"I would like to send a huge thank you to everyone at the Family Support team. The last couple of years have been extremely stressful. My child is really struggling with behavior issues and stealing food. We've had deputies at our house a half dozen times, we've had to call and she has called them...
Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA
PWSA | USA is excited to share the findings from a grant funding opportunity, awarded to and studied by Kasey Bedard, Ph.D., BCBA-D, IBA. This grant assisted Kasey with her work on PWS Smart-Start, a behavior-analytic caregiver training program. Kasey gives a brief overview of her results below. ------------------------------------------------------------------------------------------ Contributed by Kasey Bedard The purpose...
LEVO Therapeutics to Close PWS Drug Trial, Phase III Carbetocin
Yesterday afternoon, PWSA | USA learned in a conversation with LEVO Therapeutics that the company has made the decision to close their Phase III Carbetocin study. LEVO shared they are in the process of potentially being acquired. If this happens, the new company will ultimately make the decision about how and when the next study...
Save the Date: PWSA | USA’s First Ever D.C. Fly-In Event
The centerpiece of PWSA | USA's 2022 Advocacy initiative is our first ever D.C. Fly-In. This exciting, in-person event will take place September 19 - 21, 2022 in Washington, D.C. and provide an opportunity for our state activists to expand their efforts and engage their individual members of Congress. Our platform will be to encourage...
RESCHEDULED: Join us for our Next Advocacy in Action Webinar on June 8th!
Due to technical issues, we were forced to reschedule our May Advocacy in Action webinar featuring Rachel Derby with Patients Rising for June 8, 2022 at 8:00 p.m. EST. We apologize for any inconvenience this may have caused, but we’re looking forward to seeing all of you who can attend!
It’s Teacher Appreciation Week!
Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you? I know I would not be. I considered being a teacher – who does not love the idea of getting out of work by three...
The 2022 Giving Challenge is now LIVE!
The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...
Hyperphagia and How it Affects Learning
Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...