If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions...
In a recently published study from Japan, 20 children with Prader-Willi syndrome (PWS) were retrospectively evaluated for the effect of nutritional intervention (caloric restriction) and growth hormone (GH) treatment on visceral adipose tissue (VAT). VAT has been shown to be a marker for risk of metabolic complications and is believed to be a better...
Summer is the perfect opportunity to spend time with your family, have fun, and de-stress. Whether you are hiking near a remote waterfall, camping in your own backyard, riding bikes through the neighborhood, or running through the sprinkler, doing it as a family makes it more fun and helps create life-long memories. Individuals with...
You have heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physical activity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and...
It is National Teacher Appreciation Week and there is no better time to show the teachers in your life how valuable they are your children’s academic success and overall development! I once considered becoming a teacher (Who doesn’t; love the idea of getting out of work by 3 PM every day and long summer...
Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY! Over 45 years ago, PWSA (USA) was founded by volunteers. It remained a fully volunteer-run organization until 1980 when our first paid Executive Director was hired (the next paid staff wasn’t hired until 1984!). While the number of staff has grown to 14,...
Stuck inside your home and need things to do? We’ve put together a list of resources to help you out at home! ✅ Easy Peasy All-in-One Homeschooling – complete or partial free curriculum for all ages and stages https://allinonehomeschool.com/ ✅ Khan Academy – education for everyone, math, science, etc https://www.khanacademy.org/ ✅ Spelling City https://www.spellingcity.com/ ✅ Scripture Typer and...
PWSA (USA) is aware that the threat of illness is always a potential danger to those with PWS, their families and community. We advise our families to be extra vigilant in their efforts to prevent the spread of viral illness especially at this time when COVID-19 is likely to be present in their communities...
National Nutrition Month – March 2020 By: Stacy Ward, Director of Family/Medical Support & Special Projects March is National Nutrition Month. A month when the Academy of Nutrition and Dietetics encourages people to focus on making informed nutrition decisions, and good eating and physical activity habits. Parents and families of loved ones diagnosed...
She’s 39 now, my Lauren, and tonight is the big Night to Shine Dance (sponsored by the Tim Tebow Foundation). We’ve been doing all the things that girls do when you prepare for prom or a formal dance. Fittings, alterations, accessories, hair and make-up. She’s as excited about this as she was about the...
Sleep-related breathing disorders (SRBD) are common in people with Prader-Willi syndrome (PWS). Young adults with PWS benefit from GH continuation after attaining adult height by maintaining the improved body composition obtained during childhood. There are, no studies about the effects of GH on SRBD in young adults with PWS who were treated with GH during childhood. The...
Children, and many adults, look forward to Halloween with great anticipation…Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family…What could be more fun? But, what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities? The...
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.