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...
Category: Blog
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...
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...
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...
New Guidances Released for Disciplinary Actions in Schools
On July 19, 2022, the U.S. Department of Education Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) released new guidances designed to clarify the use of disciplinary practices in schools. The guidances clarify that students with disabilities have legal rights and protections in the Individuals with Disabilities Education Act...
Participate in a PWS Specific Sleep Study
Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...
Get to Know Information and Referral Specialist Sarah Kasaby!
What’s your job title? Information & Referral Specialist What sort of duties do you have at work? Front desk Family Support calls and emails, Database merging Do you have any mentors in your professional life? Yes What was your first job? Customer Service Who inspires you? My boss, my brother, my husband What kind of...
Get to Know Alterman Family Support Counselor Kim Tula!
What’s your job title? Alterman Family Support Counselor What was your first job? Hostess What kind of music do you like? Country Do you like traveling? Yes What’s the best place you’ve traveled to? Riviera Maya, Mexico and Disney World Do you like reading? If so, what genre of books do you like? Yes, suspense...
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...