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Research Blog

Endocannabinoids As a Potential Therapy for Hyperphagia in PWS

The mechanisms in the nervous system that control appetite and satiation are complex. And the dysfunctions in those mechanisms that lead to hyperphagia and obesity in people with PWS are likewise complex and unclear. Yet, several hypothalamic appetite regulators have been identified...

Orthopedic Issues and Prader-Willi Syndrome: Q&A With Dr. van Bosse

Like many medical providers, Dr. Harold van Bosse came to specialize on Prader-Willi Syndrome (PWS) by happenstance. In the late 90s, a pediatric patient with PWS came under his care for treatment of scoliosis. At the time, not much was known about orthopedic issues for PWS patients, but van Bosse learned what he could...

Studies Show PWS Caregiver Stress Can And Should Be Addressed

Parenting a child with special needs can be full of wonderful unexpected moments of joy such as seeing your child accomplish a difficult task or witnessing him or her make progress in therapies after months of hard work. These are unique and special joys experienced by parents of children with special needs. Being part of the special needs community as a parent can also lead to developing deep, meaningful connections with other parents who also have a child with special needs...

Feeding Challenges and PWS: Q&A With Speech Pathologist Sara Parker

Food, hunger, mealtimes, eating — these are all important issues for people with PWS and their families. Sara Parker knows all about feeding challenges and PWS. She's a speech pathologist who specializes in pediatric feeding and has spent more than two decades working with infants and children with complex medical diagnosis and feeding concerns...

'We Believe There Will Be Relief For Children With PWS': A Mom's Story

A special contribution by One SMALL Step host Samantha Kalasek

Once upon a time, there was a "boy mom" blessed to be outnumbered. She believed she was living a very basic tale until she turned the page and realized it was actually a choose-your-own-adventure story.

I remember finding out I was pregnant with baby boy number three...

Hougland On PWS Research: The Right People Asking The Right Questions

Dr. James Hougland is a multi-award–winning biochemist at Syracuse University and recipient of a 2013 BIG Grant through the Foundation for Prader-Willi Research...

Researcher Schaaf Predicts Dramatic Increase In PWS Quality of Life

Schaaf-Yang Syndrome (SYS) is a rare genetic condition that shares some clinical features with PWS. SYS is caused by the disruption of the MAGEL2 gene on chromosome 15, which is also missing in people with PWS. People with each of the syndromes experience issues with feeding in infancy (hypertonia), developmental delay and disability, and sleep apnea...

Conference Speaker Elizabeth Roof on Forming Social Connections In PWS

For more than 22 years, Elizabeth Roof has been researching Prader-Willi Syndrome (PWS), and working with those who have the disorder and their families...

Accelerating the Development of Treatments for PWS

While genetic therapy has the potential to be transformative for Prader-Willi syndrome, the fact is genetic therapy technology is still in its early stages and it could be many years before it’s viable for PWS. While FPWR continues to move genetic approaches forward, we are cognizant of the need for treatments to be available in the short-term...

Dr. Dimitropoulos: Boosting Social Cognition in PWS With Pretend Play

Imaginative play has an important role in child development. Scientific evidence suggests that the ability to engage in "pretend play" may translate into increased abilities in social interactions and social-cognitive function. However, children with Prader-Willi syndrome (PWS) commonly struggle with pretend play...