Announcement from PWS Global Registry: See infographic with visual data below. ----------------------------------------------------------------------------------------- As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registry...
PWSA | USA has been informed that Harold J.P. van Bosse, MD FAAOS, joined the Orthopedics team at SSM Health/Saint Louis University/Cardinal Glennon Children's Hospital in St. Louis, MO. "I look forward to continuing my work with patients and families of children with Prader-Willi syndrome," said Dr. van Bosse. If you are interested in scheduling...
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...
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....
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...
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...
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, and friends...
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...
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...
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....
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...
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...
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.