Food Security: Planning for the Holidays, Family Gatherings and Parties Holidays, family gatherings, parties and FOOD go hand in hand. With thoughtful planning and proactive preparation, these events can be successful, healthy experiences for everyone. It’s important that everyone is prepared and knows the game plan. Without a plan, the person with PWS may experience...
Tag: Education
Home Schooling: But What About Socialization? (Part 7 of a Series)
Ask any homeschooling family and they will tell you that the number one question when someone finds out they home school is “but what about socialization?” I often tell people that if we took advantage of all the opportunities to socialize, we would never get any lessons done. Right now, with everyone across the country...
Home Schooling: How to Pick Curriculum: What to Use, Where to Get, How to Implement (Part 4 in a Series)
There are hundreds of different options when it comes to picking curriculum which can make it both exciting and overwhelming. Hopefully by the time you’re done reading this you’ll feel at least a little more prepared. As with all the articles in this series, we’ll discuss both distance learning through your school and traditional homeschooling....
Help! My kids are Schooling at Home and I don’t Know What to Do!
One of the biggest changes that the Covid-19 pandemic has brought is changes to the way our kids are educated. Most students spent all day at school, in a classroom, surrounded by other students, and with a teacher leading their learning. As schools around the country shut down, parents were forced into a variety of...
At Home Resources for Families
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 Bible...
Important Information regarding COVID-19
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 at...
National Nutrition Month
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 with...
Sleep-Related Breathing Disorders in Young Adults With Prader-Willi Syndrome: A Placebo-Controlled, Crossover GH Trial
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 objective...
Halloween Fun
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 answer...
The Safety and Efficacy of Growth Hormone (GH) Treatment in Infants with PWS; Findings from Current Research
by Mary S. Burr DNP, CPNP There is very little scientific evidence regarding the effects of early treatment with Growth Hormone (GH) in infants with PWS. Most of the information we have is anecdotal or reported case by case. The aim of this article is to review the evidence available regarding the effectiveness and safety...
A Comprehensive Overview of GI Issues in Prader-Willi Syndrome
Ann Scheimann, M.D., M.B.A. Dr. Scheimann is a Gastroenterologist and expert on PWS. Ann is a PWSA (USA) medical consultant on PWS Gastrointestinal (GI) issues. The prevalence of GI issues in persons with PWS of all ages is quite high. In addition to early feeding difficulties, reflux and aspiration symptoms are frequent problems in infancy. ...
Why You Should Hire Someone with Prader-Willi Syndrome
Persons with Prader-Willi syndrome (PWS) will work hard to earn your praise for a job well done. Given the correct environmental structure and supports, someone with PWS can be one of your hardest working and valued employees. When it comes to tasks like sorting, shredding, adhering stamps onto cards, repetitive responsibilities of this nature, and...