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 ✅ Khan Academy – education for everyone, math, science, etc ✅ Spelling City ✅ Scripture Typer and Bible Memory […]

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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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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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, […]

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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 […]

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