A Dream I Can Believe In
When I was pregnant with Lily, I had all of these dreams of what it would be like to have a baby. I read all of the books on parenting I could get my hands on: books about what to
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Molecular Insights and a New Target for Drug Development in PWS [VIDEO]
Columbia University Medical Center (CUMC) researchers have discovered that a deficiency of the enzyme prohormone covertase (PC1) in the brain may be linked to most of the neuro-hormonal abnormalities in Prader-Willi syndrome (PWS), a genetic condition that causes extreme hunger
I Learned from My Daughter That Life is About Love
A special contribution by guest blogger Chelsea Balumas How has your child exceeded your expectations? Sienna is so strong. She is such a fighter, and she just keeps surprising us with her strides in her development. She was our first
Language Delays and Success in the Classroom: Presentation by Ellen Brigger, M.Ed [VIDEO]
Many children with PWS are affected by early language delays. If those delays aren't addressed, the affects can be far-reaching, not just in school, but beyond. Research on these delays shows a number of therapies to be very effective, but
Believe in Yourself and Believe in Your Child
A special contribution by guest blogger Lisa Miller What would you say to a parent whose child has recently been diagnosed with PWS? Our son is 5 now, but I remember the dark diagnosis days so well. The first year
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 with having a brother with Prader-Willi Syndrome. Of course,
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 unknown. We had the privilege
Mental Health Professionals Release 10 PWS Research Recommendations
Mental health professionals have published 10 recommendations for Prader-Willi syndrome (PWS) research. These recommendations create urgency for further research and treatments to improve quality of life and increase independence for people with PWS. The recommendations are included below, from the
FPWR Receives $30,000 PCORI Award for Real World Data Workshop
The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award. The award will support an
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