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Research (12)

FPWR, FAST, ASF, and Dup15q Unite to Fund Newborn Screening Grant

November 2, 2021

The Foundation for Prader-Willi Research (FPWR), Foundation for Angelman Syndrome Therapeutics (FAST), Angelman Syndrome Foundation (ASF), and Dup15q Alliance announce a collaborative initiative to fund the addition of chromosome 15 conditions to Early Check, a flexible framework amenable to screening

How to Identify Mental Health Challenges in Your Loved One with PWS

October 15, 2021

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early. Mental health issues in PWS are a significant challenge for many people with Prader-Willi syndrome. As with

Hyponatremia In PWS Is Rare But Fluid Intake Should Still Be Monitored

September 29, 2021

Hyponatremia is a condition where the sodium (salt) levels in the body are too low. If sodium levels get low enough, the person may become confused, experience a seizure, or even slip into a coma and (rarely) die. A few

PATH for PWS Data Supports Positive Findings From DCCR Trial

September 14, 2021

Data from the PATH for PWS study, an ongoing natural history study of individuals with PWS sponsored by the Foundation for Prader-Willi Research, supports the benefits observed in the open-label study (C602) of DCCR. Analysis of trial data has shown

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

September 9, 2021

Dr. Rachel Wevrick and her team have just published a new paper looking at the function of the protein encoded by the MAGEL2 gene, one of the genes in the PWS region of chromosome 15. This is the first-ever study

New Paper Provides Data on Vision Problems in People with PWS

August 16, 2021

Thanks to the participation of so many in our community, our team was able to share the largest study ever on eye problems in PWS, using data from the Global PWS Registry. The paper “Incidence of strabismus, strabismus surgeries, and

New Paper Provides Definitions of Common PWS Behavioral Features

July 13, 2021

As any parent of loved ones with PWS can attest, defining the spectrum of symptoms of PWS can be a challenge! To help solve that problem, a paper has been published that provides consistent descriptions of common PWS–related behaviors. The

New PWS Research Compares Mini-Brains In A Dish

July 6, 2021

Dr. Gua-Li Ming from the University of Pennsylvania has developed a new cellular model of PWS: a 3D organoid that mimics the arcuate nucleus found in the hypothalamus. This organoid, derived from stem cells with PWS, was compared to a

Research Confirms Growth Hormone Does Not Worsen Scoliosis

July 1, 2021

Scoliosis is common in people with Prader-Willi syndrome (PWS), occurring in approximately 80% of individuals over the age of 10 (compared to 3% in the general population). Because scoliosis often develops or progresses during periods of growth, families and healthcare

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