Foundation for Prader-Willi Blog (60)

I Turn to PWS Research for Hope, and to Other PWS Moms for Help

A special contribution by guest blogger Maegan Richard When Cade was born, he was fragile and still — a tiny baby who kept doctors guessing and parents on edge. At just four weeks old, Cade was diagnosed with Prader-Willi syndrome (PWS). The genetici...

March 31, 2017 Read More

Topics: Stories of Hope

Schaaf Research Connects Missing MAGEL2 Gene to PWS Symptoms

Prader Willi syndrome (PWS) results when a set of key genes on chromosome 15 are missing and/or inactive. Figuring out the role played by each of these genes in PWS is a major goal for PWS research. One of the genes in the PWS region is called MAGEL2...

March 29, 2017 Read More

Topics: Research, Schaaf-Yang Syndrome

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 the NICU and through our geneticist, we only heard about what ...

March 24, 2017 Read More

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...

March 22, 2017 Read More

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.

March 17, 2017 Read More

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 jo...

March 10, 2017 Read More

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...

March 9, 2017 Read More

Topics: Research

Don't Worry About the Small Stuff and Be Patient

A special contribution by guest blogger Teri Douglas When Jacob was diagnosed with Prader-Willi syndrome (PWS), his mom couldn’t have imagined the remarkable young man he would become. Today, Jacob continues to exceed every expectation.

March 3, 2017 Read More

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...

March 1, 2017 Read More

Topics: Research

FPWR Blog

Categories

I Turn to PWS Research for Hope, and to Other PWS Moms for Help

Schaaf Research Connects Missing MAGEL2 Gene to PWS Symptoms

Your Child Is So Much More Than a PWS Diagnosis

Will Vagus Nerve Stimulation Effectively Treat Behavior in PWS?

Your Child Can and Will Have Successes You Can Barely Imagine

What I Wish They Had Told Me About PWS

Cell Culture Model Used to Study How PWS Genes Regulate Hormones

Don't Worry About the Small Stuff and Be Patient

How to Address the Challenges of Developing PWS Therapies

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