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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Exciting New $10,000 Match for Oxytocin

In honor of PWS Awareness Month in May, the Prader-Willi California Foundation has initiated another challenge to raise funds to support the Oxytocin Phase 2 Study! Help us raise just $10,000 and PWCF will match it with another $10,000! That’s $20,000 more to ensure the Oxytocin Phase 2 Study progresses! We are grateful to PWCF […]

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A Massive PWS Awareness Campaign for Geneticists

PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge […]

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