Category: Blog

Surviving Teletherapy

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...

Visceral Adipose Tissue Resides Within the Reference Range in Children with Prader-Willi syndrome Receiving Nutritional Intervention on a Regular Basis

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...

Sunshine Means It’s Summertime!

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...

Exercise: Healthy Fun for Everyone

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...

Happy Teacher Appreciation Week!

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...

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...

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...

Meet Our Hope Hero: Lauren

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 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...

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...

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