PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS

Profiling of the gut microbiome in children with PWS Principal Investigator – Andrea M Haqq, MD, MHS, FRCP University of Alberta, Canada   ABSTRACT Individuals with a genetic condition called Prader-Willi Syndrome (PWS) are at risk for development of obesity at a young age. Children with PWS often have a very high food intake because […]

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PWSA (USA) Approves Grant

We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies. […]

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Please Participate in Research on PWS Caregiver Stress

I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS. The survey will […]

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Exciting News on Carbetocin for PWS!

Sara Cotter, mom to a child with Prader-Willi syndrome (PWS), has formed a company dedicated to advancing treatments for PWS and related disorders. The company is called Levo Therapeutics ( Sara has years of experience in the pharmaceutical industry, most recently as an analyst with UBS. She recently left her job to pursue the leadership […]

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Two New Research Studies

If you live in the Indianapolis area and have a child with PWS between the ages of 3 and 11 years old, you may be eligible for one of these very interesting studies on remote education for PWS. Please read the two attached documents.   The PRETEND (Parent-focused Remote Education to Enhance Development) – Research […]

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Update: Oxytocin Phase 2 Trial

It has been nearly one year since we learned of the initial potential of oxytocin and PWSA (USA) began raising funds for the phase 2 clinical trial. This trial will provide us a greater understanding of the potential benefits, appropriate dosage needed, and additional vital information. The phase 1 study results were very positive and […]

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Telehealth Intervention Research-Case Western Reserve University

We are currently recruiting children between the ages of 3 and 11 with PWS and their caregivers for two intervention studies. These play-based interventions are delivered via telehealth (webcam chatting). Our research team will be in the NYC area (Queens) on May 15-16 to enroll families. Study information can be found in the attached fliers. […]

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