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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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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 […]

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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.  […]

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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 […]

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Summer Fun

Whether it’s 90 degrees and humid or 70 degrees and cloudy, summer is just around the corner. That means it’s time to prepare and plan your summer fun! For individuals with Prader-Willi syndrome, summer fun must include plans for heat precaution as they often have difficulty regulating body temperature and can overheat easily. Here are some […]

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Narcolepsy as a Characteristic of Prader-Willi Syndrome

Althea Shelton, MD and Jessica Duis, MD, MS Use of growth hormone requires a baseline sleep study prior to use and one at 8-10 weeks after initiation. Beyond this, when we see a child or adult in clinic who is having excessive daytime sleepiness and/or worsening behavioral concerns among other symptoms (e.g., headaches or bedwetting), […]

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Bringing Hope: A Mother’s Perspective

By Kristi Rickenbach, mother to Justice age 15 with PWS, board member, PWSA (USA)   “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller   There are things that happen in our lives that we have no control over- things we wish we could change. […]

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