Category: Blog

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....

Sibling Caregivers

Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often become...

Surviving Quarantine as a Sibling

Siblings of individuals with Prader-Willi syndrome (PWS) are at an increased risk of developing emotional and mental health problems. According to the 2019 study on PWS sibling well-being, participants showed incredibly high rates of distress and lower than average resilience (Murphy, Thornton & Thornton, 2019.) The outbreak of COVID-19 and subsequent quarantine may make the...

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 are...

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 marker...

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 Prader-Willi...

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 can...

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 vacations?!)....

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...

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...

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 prom...

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...

National Direct Support Professional Week

Direct support professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion,...

Recruitment: Acceptance and commitment training (ACT) for fathers of adolescents with PWS, a pilot study funded by the Foundation for Prader Willi Research

Fathers who have an adolescent with PWS age 13-18 are invited to participate in a 4-session, online, small group training exercise to reduce father’s perception of stress, improve parenting satisfaction and increase family involvement. Participants must reside at home with their adolescent and the adolescent’s mother, have a personal computer with a camera, microphone and internet...

Scroll to top