Study Recruiting Participants Ages 3-11 and their Caregivers

dimitropolous-header.jpgChildren between the ages of 3 and 11 who have PWS, and their caregivers, are being recruited for two intervention studies being conducted by researchers at Case Western Reserve University.

The study team will be visiting Pittsburgh, PA, on February 6th, and California on March 9-12 to conduct baseline assessments for study participants.

PRETEND (Parent-focused Remote Education to Enhance Development), funded by FPWR, will examine the social, cognitive, and emotional behavior in children with PWS (ages 3-5) and compare them to children without PWS in order to understand strengths and challenges in social communication in PWS. The feasibility of a parent training and education program designed to increase learning and play between parents and children with PWS will be evaluated. More Details

The Telehealth Intervention Study, funded by PWSA-USA, will administer play-based intervention in participants' homes (ages 5-11) using videoconferencing (telehealth) to build skill sets based on the child's development. This study aims to determine the feasibility of using telehealth intervention in the PWS population. More Details

An in-person baseline assessment is required for both studies; however, the Case Western team will be visiting Pittsburgh, San Diego and New York for families in those areas.

Pittsburgh—  Saturday, February 6th @ the Children’s Institute PA Eligibility survey

California— Wed-Sat, March 9-12th in San Diego (and possibly LA, depending on interest)  CA Eligibility survey

New York - May, dates to be determined.

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.