Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent...
PWSA (USA) Supports Two New Important Studies!
Calling all fathers! A study on the role of PWS male caregivers has been approved by PWSA (USA). Dr. Leon Caldwell has been awarded a grant to do a study on the needs and issues of PWS fathers and other male caregivers. The purpose of this study is to learn about the coping and parenting...
Two New Prader-Willi Syndrome Films
PWSAI (Ireland) has released a new film that was produced in cooperation with IPWSO and PWSA (USA). The film is Therapeutic Interventions for the Young Child with Prader-Willi Syndrome presented by Janice Agarwal, CNDT-PT The film was funded from the proceeds of the Galway Cycle 2014. We are very grateful to Janice for her participation...
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...
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...
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 ...
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...
Exciting News: $50,000 Matching Gift Grant for the Oxytocin Phase 2 Study!
The PWSA (USA) Executive Committee of the Board has announced a $50,000 matching gift grant to initiate fundraising efforts for this potentially life-changing research study for our children and our families. Any donations made between now and August 31st will be matched dollar for dollar up to a total of $50,000! Click Here to make your donation today! You...
Dr. Miller Phase 2 Oxytocin Trial Webinar
Dr. Jennifer Miller’s webinar on the Phase 2 Oxytocin study recording is available. Click here to view the recording.
Prader-Willi syndrome: a review of clinical, genetic, and endocrine findings
We are pleased to share the following new publication which was written by three of our PWSA (USA) Advisory Board members: Prader-Willi syndrome: a review of clinical, genetic, and endocrine findings M. A. Angulo, M. G. Butler &M. E. Cataletto Journal of Endocrinological Investigation (Springer) Click HERE to read the publication
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...
Research Funding Opportunities
Celebrating 40 years as a charitable nonprofit, Prader-Willi Syndrome Association (USA) [“PWSA (USA)”] is pleased to offer grant assistance for scientific researchers with an interest in improving the lives of those with Prader-Willi syndrome (PWS). PWSA (USA) is seeking to fund projects for a maximum of $75,000 total per project for a 1-2 year grant...