Foundation for Prader-Willi Blog (64)

FPWR Receives $30,000 PCORI Award for Real World Data Workshop

The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award.

September 26, 2016 Read More

Topics: News

Loss Of Magel2 Contributes To Muscle Weakness in PWS

Muscle weakness (hypotonia) is often the most obvious first symptom in newborns with PWS. While hypotonia in infants is most severe, low muscle tone continues to limit endurance and reduce participation in daily activities in children and adults with...

September 20, 2016 Read More

Topics: Research

Genetic Therapy Researchers Work to Reactivate PWS Genes, Identify New Targets

All individuals are born with two copies of chromosome 15: one copy comes from the mother, the other the father. In the case of Prader-Willi syndrome, the paternal copy is missing a portion of the chromosome (deletion), or is gone altogether(UPD), bu...

September 12, 2016 Read More

Topics: News

Real-World Data, Real-World Evidence, and PWS

"Real-world data" and "real-world evidence" (RWD and RWE) are hot buzz words in the fields of healthcare and research. This is an emerging area of data acquisition and analysis, with the potential to transform clinical research and patient care. It i...

September 8, 2016 Read More

Topics: Research

Bearden Research Investigates Early Signs of Psychosis in PWS

Behavior and mental health issues are an important part of Prader-Willi syndrome (PWS). In particular, one of the most challenging aspects for families to face is the onset of psychosis (i.e., mental illness characterized by symptoms, such as delusio...

September 5, 2016 Read More

Topics: Research

Social Communication: Its Role In Behavior & Cognitive Development In PWS

In social communication, the ability to appropriately recognize and process facial expressions is critical to understanding others' emotional and mental state. People can often "read" emotions on someone's face, including happiness, sadness, fear, su...

August 29, 2016 Read More

Topics: Research

Growth Hormone Therapy for PWS

In multiple studies, human growth hormone (HGH) has been found to be beneficial for those with Prader-Willi syndrome. In June of 2000, growth hormone therapy for PWS was officially approved by the Federal Drug Administration (FDA) in the United State...

August 24, 2016 Read More

Topics: Research

The Gut-Brain Connection: Breakthroughs in Hunger & Satiety Signaling

There's been a lot of buzz in the scientific literature about the "gut-brain connection" — the two-way communication occurring between the brain and the gut. This communication can occur directly through nerve signals, and indirectly by hormones secr...

August 22, 2016 Read More

Topics: Research

Abnormal Sleep Patterns in PWS Are Focus of LaSalle's Research

Abnormal sleep patterns in PWS make sleep disorders common for people with Prader-Willi syndrome. These are associated with central and obstructive apnea, disrupted sleep, and excessive daytime sleepiness. But why exactly do individuals with PWS have...

August 9, 2016 Read More

Topics: Research

FPWR Blog

Categories

FPWR Receives $30,000 PCORI Award for Real World Data Workshop

Loss Of Magel2 Contributes To Muscle Weakness in PWS

Genetic Therapy Researchers Work to Reactivate PWS Genes, Identify New Targets

Real-World Data, Real-World Evidence, and PWS

Bearden Research Investigates Early Signs of Psychosis in PWS

Social Communication: Its Role In Behavior & Cognitive Development In PWS

Growth Hormone Therapy for PWS

The Gut-Brain Connection: Breakthroughs in Hunger & Satiety Signaling

Abnormal Sleep Patterns in PWS Are Focus of LaSalle's Research

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