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Incidence of Autism In People With PWS Lower Than Previously Thought

July 5, 2017

The potential overlap between PWS and symptoms of autism spectrum disorder (ASD) has been the subject of discussion and research for some time now. In the past, research found estimates of autism in people with PWS to be as high

Evan smiles while sitting on a porch step with his backpack as Blake wraps an arm around him and leans in close.

For This Dad, PWS Means Exceeding Expectations

June 30, 2017

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

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

June 23, 2017

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

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

June 21, 2017

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 this part of

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

June 14, 2017

There has been much interest in the Prader-Willi syndrome (PWS) community regarding vagus nerve stimulation, a novel approach to treat challenging PWS-related behaviors. Research into vagus nerve stimulation (VNS) firstwhich is being led by Dr. Tony Holland and supported by

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

June 9, 2017

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

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

June 8, 2017

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, PhD, suggesting that

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Targeted Reactivation of Silenced PWS Genes as a Potential Therapy

June 7, 2017

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

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

June 2, 2017

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

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