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FPWR Blog

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A Father's Story: Fighting the PWS Battle With Shared Love, Clear Vision

A special contribution by guest blogger, dad, and One Small Step host Adam Larson An expecting father has crystal clear vision. You are at the moment when all you will ever amount to is about to be tested. All of your talents will be called upon and ...
June 9, 2017 Read More

Topics: Stories of Hope

Dr. Rudolph Leibel: Searching for PWS Causes at Molecular Level In Brain

Many may remember Dr. Rudolph Leibel’s presentation on stem cells and Prader-Willi Syndrome (PWS) at the FPWR Research Conference in November 2014. He also published a breakthrough discovery in the Journal of Clinical Investigation, with Lisa Burnett...
June 8, 2017 Read More

Topics: Research

Targeted Reactivation of Silenced PWS Genes as a Potential Therapy

All individuals with Prader-Willi syndrome (PWS) have at least one copy of the PWS region from their mother, but it is turned off through a normal biological process called genomic imprinting. Normally, the chromosome 15 that is inherited from the fa...
June 7, 2017 Read More

Topics: Research

Mom Sees Past Obstacles of PWS to Find Hope In Research and Community

A special contribution by guest blogger and One SMALL Step Washington, DC, co-host Dominique Deleage Our son Charlie is now 10 years old. We found out that he had PWS when he was three weeks old. We had never heard of the disorder. I still remember t...
June 2, 2017 Read More

Topics: Stories of Hope

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,...
May 31, 2017 Read More

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...
May 24, 2017 Read More

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...
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

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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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