Category: Research

Participate in a PWS Specific Sleep Study

Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...

Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA

PWSA | USA is excited to share the findings from a grant funding opportunity, awarded to and studied by Kasey Bedard, Ph.D., BCBA-D, IBA. This grant assisted Kasey with her work on PWS Smart-Start, a behavior-analytic caregiver training program. Kasey gives a brief overview of her results below. ------------------------------------------------------------------------------------------ Contributed by Kasey Bedard The purpose...

Hyperphagia and How it Affects Learning

Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...

What Type of Research Matters to You?

For more than 40 years, PWSA | USA has played a critical role in sponsoring and advancing research for the benefit of our PWS community. We are excited to continue this important commitment to PWS research in ways you have always relied on (organizing scientific conferences, offering grants to clinicians, etc.). We are also eager...

Help PWS experts learn more about feeding tube use in PWS

The information below was provided by the Global PWS Registry --------------------------------------------------------------------------------------- We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth.  If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new...

Global PWS Registry Shares Latest Orthopedic Data for Individuals Living with PWS

The information below was provided by the Global PWS Registry and approved by the Institutional Review Board (IRB) -------------------------------------------------------------------------------------------- Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and/or surgery for spinal issues....

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