New call-to-action
New call-to-action
New call-to-action

FPWR Blog

Your Child Is So Much More Than a PWS Diagnosis

A special contribution by guest blogger Melissa Demand Melissa shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? We were lucky that in NICU and through our geneticist, we only heard about what he w...

Topics: Stories of Hope

Will Vagus Nerve Stimulation Effectively Treat Behavior in PWS?

Vagus nerve stimulation (VNS) offers the possibility of a unique, non-pharmacotherapy for treating behavior in PWS, Prader-Willi syndrome. A small pilot study involving three patients with PWS has shown promising results, and next steps are already u...

Topics: Research

Your Child Can and Will Have Successes You Can Barely Imagine

A special contribution by guest blogger Dan Yashinsky Dan shared his story via our Stories of Hope questionnaire.

Topics: Stories of Hope

What I Wish They Had Told Me About PWS

A special contribution by guest blogger Amber Rector The day I found out I was pregnant, I imagined myself carrying to term, pushing out a healthy baby and going home the standard two to three days later. I would arrive home with my new bundle of joy...

Topics: Stories of Hope

Cell Culture Model Used to Study How PWS Genes Regulate Hormones

Hormones are little messengers that circulate in the body, carrying important information from one location to the next, and triggering the appropriate response to that information. Numerous hormone levels are altered in PWS. These include hormones t...

Topics: Research

Don't Worry About the Small Stuff and Be Patient

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

Topics: Stories of Hope

How to Address the Challenges of Developing PWS Therapies

Prader-Willi syndrome (PWS) is a complex disorder, and, to date, supportive care and growth hormone therapy are the only treatments available. The rarity of PWS, the fragmentation of experts and stakeholders involved at each stage of therapeutic deve...

Topics: Research

There is Goodness and Hope Up Ahead

A special contribution by guest blogger Anna Beasley Anna shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? In so many different ways, she just keeps fighting. We weren't given a lot of hope at fir...

Topics: Stories of Hope

Temperature May Impact Gene Expression in Mice During PWS Research

There are several mouse models used in PWS research, each missing some part of the DNA that is absent in PWS. Two of the most commonly used mouse models are the Snord116 mouse and the Magel2 mouse. Each of these has a deletion of the respective PWS-r...

Topics: Research