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FPWR Blog

Study Explores How and Why of PWS Severity, Mosaicism In PWS By UPD

Individuals with PWS present with a very broad range of severity of symptoms, which is why people often refer to PWS as a “spectrum" disorder. A new study funded by FPWR will help us understand how and why there are different degrees of PWS severity,...

Topics: Research

Study Uses Eye Tracking To Develop Biomarkers for Hyperphagia in PWS

Although hyperphagia (excessive appetite) is a hallmark of PWS, it's one of the most difficult features to accurately measure and characterize. Currently, the main tools in this area are questionnaires about food behavior and food interest. These can...

Topics: Research

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...

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 about the arrival of our daughter and son-in-law's firstborn. W...

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...

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...

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,...

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...

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...

Topics: Research