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Research (13)

Scoliosis Publication is Resource for Parents and Medical Professionals

July 10, 2020

Parents may want to download and keep a copy of this review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and

Study Supports Eye Tracking to Measure Hyperphagia in PWS

July 2, 2020

Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritional

Evidence For Accelerated Aging In Young Adults with PWS

June 23, 2020

Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area

PWS Registry Data: Vision [INFOGRAPHIC]

April 15, 2020

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

February 25, 2020

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

February 5, 2020

Temper outbursts and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Emerging research suggests that vagus nerve stimulation (VNS) may hold promise as a treatment for reducing

Self-Care for PWS Caregivers — Elisabeth Dykens [2019 CONFERENCE VIDEO]

December 4, 2019

In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done

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Gillian Segall Inspires PWS Community With Message of Hope [2019 CONFERENCE VIDEO]

November 20, 2019

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New

IEPs and PWS — Advocating for Your Child [2019 CONFERENCE VIDEO]

November 18, 2019

In this 51-minute presentation, Dr. Katy Chambers helped participants understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with

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