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Research Blog

2018 PWS Research Symposium and Family Conference - We Can, We Will!


From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

As my second month in my new role as FPWR's CEO concludes, I would like to reflect on some of my early observations and experiences with this truly incredible Prader-Willi community. 

During the short time I've been in this role, I've met or spoken with many volunteers and caregivers and now have begun to build an understanding of the enormous challenges you face on a daily basis and the incredible investment you're making in FPWR’s research to improve the lives of individuals with PWS.

Recently Published Study Compares Schaaf-Yang and Prader-Willi Syndromes

Dr. Christian Schaaf and his group, in collaboration with Dr. Jennifer Miller, has published a new study examining clinical similarities and differences between Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS).  Dr...

New PWS Publications In High-Impact Medical Journals

Researchers are making progress every day toward FPWR's mission of eliminating the challenges of PWS and advancing therapeutic development...

ICD-10 Coding Adventures! Why PWS Needs Its Own ICD-10 Code

A big shout out to Dr. Dan Driscoll today! He is at a meeting of the ICD-10 Coordinating & Maintenance Committee (CMC) in Baltimore, making the case that PWS should have its own, unique ICD-10 code.

What’s an ICD-10 code, you may ask? That’s the code your doctor enters into your medical record to indicate your diagnosis, symptoms and medical procedures...

Preventing Mental Illness in PWS: New Study Identifies Early Signs

Behavior and mental health issues are important aspects in Prader-Willi syndrome (PWS), impacting many individuals with the syndrome and their families. In particular, one of the most challenging aspects for families to deal with can be symptoms of serious mental illness such as psychosis (i.e., mental illness characterized by symptoms such as delusions or hallucinations)...

PWS Mom's Courage Grows as the Story of Her Daughter Unfolds

A special contribution by One Small Step host Bailey Beasley

“Something came back on the microarray.”

We had just landed after being care flighted to a large children’s hospital...

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

The inability to vomit has previously been cited as a characteristic of Prader-Willi syndrome. While there is a reduction in vomiting as compared to neuro-typical peers, 54% of participants in the Global PWS Registry have vomited (n=304) indicating that it is not as rare as often thought...

Dad Believes In an Amazing Life For His Son With PWS

A special contribution by Brian Kalasek

My introduction to PWS probably started very similar to other PWS families. We were admitted to the NICU on day 3 of Paxton’s life. He hadn’t really “woken up” yet, but the nurses and doctors up to that point didn’t seem too concerned. They kept telling us he had WWBS, Wimpy White Boy Syndrome...

GDF15: A New Appetite-Regulating Pathway With PWS Therapy Potential

A series of recent discoveries have defined a new pathway for regulating appetite and satiety suggesting that a naturally occurring protein in our bodies could have the potential to be a safe and effective therapy for obesity. This protein, known as growth differentiation factor 15 or GDF15 (or MIC1), is mostly made in the liver but also in other tissues...