Foundation for Prader-Willi Blog (55)

Mom's Advice for PWS Parents: 'Watch Your Baby Fly!'

A special contribution by guest blogger Jennifer Terranova We all have dreams when we plan a family. We all believe our babies will be the cutest, sweetest, most amazing little things in the whole wide world. We are all determined that our future lit...

May 12, 2017 Read More

Topics: Stories of Hope

2017 PWS Research Grants Cover Behavior, Genetics, Hyperphagia & More

We're thrilled to announce our first round of PWS research grants for 2017! Seven outstanding projects were selected for funding, totaling $795,221 in support. These projects address a variety of topics important in PWS, including behavior, genetics,...

May 10, 2017 Read More

Topics: Research

Happy Dreams Return for Mom, as Baby Becomes Little Boy

A special contribution by guest blogger Becky McWilliams When I became pregnant with my second child, I had endless dreams. I dreamt about whether this mysterious little being would be a girl or another boy. I dreamt about the relationship that he or...

May 5, 2017 Read More

Topics: Stories of Hope

Dr. Ingrid Tein Studies Potential Benefits of CoQ10 in PWS

Many parents of individuals with Prader-Willi syndrome (PWS) have been faced with ambiguous information about the dietary supplement coenzyme Q10 (CoQ10). There are plenty of anecdotal reports of supplemental CoQ10 providing a great improvement in me...

May 3, 2017 Read More

Topics: Research

A Beautiful Life: One Mother's PWS Journey from Fear to Hope

A special contribution by guest blogger and One SMALL Step host Rachael Petterson Every night, for several weeks following my daughter Mae’s birth, I stayed up late reading medical journal articles and studies. I was determined to figure out why Mae ...

April 28, 2017 Read More

Topics: Stories of Hope

Biomarkers and Beyond: 2016 Update from PWS Clinical Trials Consortium

Over the past several years, the PWS community has been fortunate to see several potential therapies for PWS enter clinical trials. To date, the only FDA-approved drug for the treatment of PWS is growth hormone, but it's clear that new medications ar...

April 27, 2017 Read More

Topics: Research

One Small Step for Lincoln: PWS Research Gives Me Hope

A special contribution by guest blogger Kristine Mosca There was nothing more exciting than to hear that we were expecting our fourth child. I had delivered three beautiful children already and felt more than ready to welcome our fourth baby into the...

April 21, 2017 Read More

Topics: Stories of Hope

Want to Make Friends? New Online Groups Build Social Skills in PWS

A special contribution by guest blogger Elizabeth Roof Elizabeth Roof is a Senior Research Specialist at the Vanderbilt Kennedy Center and directs six research programs with children and adults with rare genetic disorders including Prader-Willi syndr...

April 19, 2017 Read More

Topics: Research

LaSalle Gene Research Paves Way for PWS Sleep and Metabolism Therapies

Sleep disorders are common in Prader-Willi syndrome (PWS). These are associated with central and obstructive apnea, disrupted sleep, and excessive daytime sleepiness. But why exactly do individuals with PWS have abnormal sleep patterns? Dr. Janine La...

April 14, 2017 Read More

Topics: Research

FPWR Blog

Categories

Mom's Advice for PWS Parents: 'Watch Your Baby Fly!'

2017 PWS Research Grants Cover Behavior, Genetics, Hyperphagia & More

Happy Dreams Return for Mom, as Baby Becomes Little Boy

Dr. Ingrid Tein Studies Potential Benefits of CoQ10 in PWS

A Beautiful Life: One Mother's PWS Journey from Fear to Hope

Biomarkers and Beyond: 2016 Update from PWS Clinical Trials Consortium

One Small Step for Lincoln: PWS Research Gives Me Hope

Want to Make Friends? New Online Groups Build Social Skills in PWS

LaSalle Gene Research Paves Way for PWS Sleep and Metabolism Therapies

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