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FPWR Blog

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My Dreams Are Bigger Now Than Before My Son's PWS Diagnosis

A special contribution by guest blogger Laura Hollatz I am a dreamer. Always have been, and always will be. When I was a little girl, I wanted to be Wonder Woman. I also dreamt of living in a huge castle with all my friends that was made out of candy...
May 24, 2017 Read More

Topics: Stories of Hope

Our Grandchild With PWS Is Our Shining Star, Our Lovebug, Our Hero

A special contribution by guest bloggers Amy and Bob Chipetz Brandon will be 5 years old on May 24. We remember seeing him, our first grandson, shortly after birth. We were all so elated of the arrival of our daughter and son-in-law's firstborn. With...
May 19, 2017 Read More

Topics: Stories of Hope

Dr. Yossi Tam Searching for Biological Basis of Osteoporosis in PWS

Individuals with PWS are at higher risk for osteoporosis than the general population. Osteoporosis is due to low bone mineral density and leads to weakened bone strength and increased risk for fractures. Dr. Yossi Tam at the Hebrew University of Jeru...
May 17, 2017 Read More

Topics: Research

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

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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