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FPWR Blog

Believe in Yourself and Believe in Your Child

A special contribution by guest blogger Lisa Miller Lisa shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Can Brain Stimulation Devices Modify Behavior or Hyperphagia in PWS?

Many of the symptoms of PWS, including hyperphagia and behavior issues, likely originate in atypical structure and/or function of neurons in the brain. This presents an additional challenge to designing drug therapies for PWS, because drugs targeted ...

Topics: Research

Zafgen Donates Hyperphagia Questionnaire to FPWR for Use in Clinical Trials

Zafgen, Inc., has donated its Hyperphagia Questionnaire for Clinical Trials (HQ-CT) instrument to FPWR to help enable the development of potential therapies for Prader-Willi syndrome. The HQ-CT is derived from a well-established, caregiver-reported q...

Topics: News

Your Child Can Do Anything! Don't Limit Them

A special contribution by guest blogger Jennifer Hannabass Jennifer shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

It's Not Normal, It's Better: A Letter to Prader-Willi Siblings

A special contribution by guest blogger Courtney Smith A letter to Prader-Willi siblings: Recently, a woman asked if I would be willing to speak with her teenage daughter who was struggling having a brother with Prader-Willi Syndrome. Of course I pro...

Topics: Stories of Hope

Improving Social Functioning in PWS [VIDEO]

“People with PWS have a real need to actually connect with others and have relationships." This was one of the many valuable insights shared by Elizabeth Roof, Senior Research Specialist at Vanderbilt University, and other panelists addressing social...

Topics: Research

Parents of Children With Special Needs: We're Unstoppable!

A special contribution by guest blogger Rosemarie Rouse Rosemarie shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

She's Shown Us Our Own Strength, Determination, Love and Acceptance

A special contribution by guest blogger Anne Fricke Anne shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Sleep Issues in PWS: Presentation by Dr. Thomas Scammell [VIDEO]

Many individuals with PWS experience significant disruption of daily life as a result of sleep issues. Daytime sleepiness, abnormal REM sleep, narcolepsy, and cataplexy are common sleep-related symptoms of PWS, however their underlying cause is unkno...

Topics: Research