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FPWR Blog

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For This Dad, PWS Means Exceeding Expectations

A special contribution by guest blogger Blake Brenneman When our son, Evan, was diagnosed with Prader-Willi syndrome (PWS), I assumed his progress would be slow. But he has exceeded every expectation. At just 15 months old, his understanding of the w...
June 30, 2017 Read More

Topics: Stories of Hope

FPWR Research Team Presents Latest Grants for PWS Studies [VIDEO]

On June 23, FPWR research staff members Theresa Strong and Jessica Bohonowych presented a webinar reviewing recent initiatives funded through FPWR. The webinar is available on video below. It includes an overview of newly funded studies, new opportun...
June 28, 2017 Read More

Topics: Research

Mom's Message to PWS Parents: Pride and Love Will Fill Your Heart

A special contribution by guest blogger Laura Capone When Tommy was born, his parents were given a long list of things he might never do. The outlook for his future felt uncertain, filled with low expectations and what-ifs. But years later, Tommy has...
June 23, 2017 Read More

Topics: Stories of Hope

Dr. Hof Looks for Link Between Brain Neurons and Mental Health in PWS

Cognition, social behavior, and decision-making are common challenges among individuals with PWS. The brain region that controls many of these functions is called the frontal lobe. To date, there has been little work on understanding differences in t...
June 21, 2017 Read More

Topics: Research

Tony Holland, Leader In PWS Research on Obesity, Satiety, and Behavior

There has been much recent interest in the Prader-Willi syndrome (PWS) community regarding vagus nerve stimulation, a novel approach to treat PWS behavior issues, which is being led by Dr. Tony Holland and supported by FPWR. In fact, Dr. Holland, a p...
June 14, 2017 Read More

Topics: Research

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 expectant father has a 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, a...
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

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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