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TOO DARN HOT!

by Kathy Clark, Medical Coordinator Body temperature regulation is a challenge for people with PWS. They can easily become overheated, especially during infancy and childhood. Here are some great ideas to help you be safe when the thermometer rises. Outdoor activities should be planned for the cooler mornings, rather than sunny afternoons or the heat […]

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Ask The Dietitian

Announcing the very first installment in our “Ask the Dietitian” series!! In this blog series, Hannah Stahmer, Registered dietitian at the University of Florida answers your questions about feeding your child with PWS! Would you like to see your question answered in an upcoming installment? Log into Facebook ,visit https://www.facebook.com/Prader-Willi-Syndrome-Association-Ask-the-Dietitian-343199949408216/ , and ask your question […]

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Important Medical Growth Charts

PWSA (USA) Growth Charts Now Available! A child’s growth is the single best indicator of their health – important data for every pediatric appointment. For children with Prader-Willi Syndrome, the pattern is not typical, and interpreting each height and weight can create questions and worries for parents and professionals. With the support of PWSA (USA) […]

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Warning – Medication combinations may fatally impair breathing in PWS!

We want to remind parents that impaired breathing is a leading cause of death in people with PWS. After the recent unexpected death at home of a young person with PWS, we want to alert parents and professionals to the potential risk factors with combinations of medications, especially after surgery. PWSA (USA) continues to collect […]

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Holidays and PWS Food Security

Family time and food go hand in hand. With planning, this can be a joyous time for all. Without a plan – it can be even more stressful than ever imagined If you will be with relatives, remind them of the importance of food security, especially at a big event. Many people do not understand […]

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Healthbridge Children’s Hospital Houston Inpatient Prader-Willi Program Termination

Dear PWS Community: For the past 5 years HealthBridge Childrens Hospital in Houston has helped children with Prader-Willi syndrome (PWS) and their families reach goals that have improved their health and overall quality of life.  HealthBridge has served numerous children over this period of time, and has made a positive and lasting impact on the […]

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A Massive PWS Awareness Campaign for Geneticists

PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge […]

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PWSA (USA) and Shriner Hospital Partnership

I am so pleased and privileged to announce the new partnership between PWSA (USA) and Shriner’s Hospitals for Children.  This relationship is exciting and, indeed, hopeful. During the 2015 PWSA (USA) National Conference I was fortunate to be introduced to Ms. Cheryl Stauss, former First Lady of Shriner’s International.  Cheryl served as First Lady of […]

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