Zafgen has released the results of the Phase 3 clinical trial of Beloranib in PWS (the “bestPWS” study). Note that PWSA (USA) and FPWR are planning a joint webinar in the next few days to review the findings and implications of the trial with the PWS community – more details will be available soon. ...
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...
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...
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...
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...
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...
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...
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) 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 ...
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...
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. Jennifer Miller’s webinar on the Phase 2 Oxytocin study recording is available. Click here to view the recording.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.