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The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety monitoring […]

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Prader-Willi California Foundation to match gifts for Oxytocin study!

$20,000 In 20 Days for Oxytocin Research! Thanks to the generosity of the Prader-Willi California Foundation (PWCF) a $10,000 matching grant has been announced for the Oxytocin phase 2 study, led by Dr. Jennifer Miller. PWCF will donate $10,000 if PWSA (USA) can raise $10,000 over the next 20 days. So for the next twenty days we have […]

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Submit Your Picture: Casting Call For This Years Angel Drive!

PWSA (USA) is asking our PWS community to submit pictures of your loved one with PWS for our 2015 Angel Drive Campaign! The photos selected will be the face of this year’s Angel Drive campaign. If you would like to submit a photo for the opportunity for your loved one to be among the faces […]

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Oxytocin Study Research Update

We want to thank all of the generous donors for their support of the oxytocin Phase 2 clinical trial sponsored by PWSA (USA) and led by Dr. Jennifer Miller and Dr. Dan Driscoll. Both physicians are well respected leaders in the field of research for Prader-Willi syndrome.  For this clinical trial, $290,000 has been raised […]

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First Annual OTM PWSA (USA) Walk 2015

The purpose of this walk is to promote awareness, provide support to children and family members who struggle with this syndrome every day, and to raise funds for the Prader-Willi Syndrome Association so we can continue to save and transform lives. HOW FAR IS THE WALK? The walk begins in JD Hamel Park, continues over […]

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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 […]

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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   […]

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Oxytocin Phase 2 Study Campaign Reaches Milestone!

In our first month of the Oxytocin campaign, we have exceeded $160,000! The PWSA (USA) Board matching gift fund of $50,000 was exhausted in less than a week! Thank you for your generosity and support for this study. To help us reach our next milestone in this potentially life-changing research study, please donate or register […]

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