Category: Blog

PWSA (USA)’s Webinar Series Continues

Prader-Willi Syndrome: Adulthood 101 With a presentation by Elizabeth Roof, M.A., on Monday, February 22, 2016, at 7:30 p.m., EST.  If you were unable to attend the 2015 conference, or missed this presentation while there, you will be glad to hear it now.  In Prader Willi Syndrome: Adulthood 101, Ms. Roof will present on supports...

2015 Holiday Tips

Dear Friends, The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all. If you will be with relatives, carefully plan ahead of time and communicate the importance of food...

Noninvasive Prenatal Screening – Testing Now Available For PWS

Janalee Heinemann, PWSA (USA) Coordinator of Research and International Affairs Noninvasive prenatal screening (NIPS) – also called noninvasive prenatal testing (NIPT) or cell–free DNA testing – is now available for Prader-Willi syndrome (PWS). Testing can be done any time after 9-10 weeks gestation because DNA from the fetus circulates in maternal blood. The testing is...

PWSA (USA) Joseph McErlane Research Grant

  PWSA (USA) is sponsoring a grant that will bring therapy to the home! PWSA (USA) Joseph McErlane Research Grant Project Title: Evaluating the Feasibility of a Telehealth Intervention of Early Social Cognitive Processes in Children with Prader-Willi syndrome Principal Investigator: Anastasia Dimitropoulos, Associate Professor of Psychology, Ph.D. Case Western Reserve University, Cleveland, OH  ...

PWSA (USA) Saving Lives in the ER

One of our goals for 2015 is to focus on ways to have more impact with ER situations. We all know that taking a child or an adult with Prader-Willi syndrome to the ER can in and of itself be life-threatening. I certainly know this through my experience of covering most medical crises for over...

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