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Research (20)

How's mom doing?

May 26, 2016

It’s not news to moms of children with PWS that ours is not an easy road. Our kids face medical problems, challenges in their schools, and often have behavioral issues that can be exhausting. Then there are the doctors’ appointments,

How You Can Ensure a Brighter Future

April 13, 2016

How can we make the future a bit brighter for our loved ones with Prader-Willi syndrome? It starts with us! Multiple potential drug treatments for Prader-Willi syndrome are currently in clinical trials and more are coming down the pipeline. Staying

New insights and unexpected connections for the PWS gene, MAGEL2

September 10, 2015

Sometimes, valuable insights about “your” genetic disease can come from studies on entirely different genetic disorders that end up being connected in ways that weren’t easily appreciated at first glance. Such is the case for a new study published by

Potential PWS Treatments Currently in Development

July 31, 2015

These potential PWS treatments are in development as of July 2015: Approach How it works Development Phase Investigators /Company *= FPWR funded Advantages Potential Limitations Genetic Therapies- These therapies seek to activate the PWS region genes on the silent maternal

Report from the Prader-Willi Syndrome Mental Health Research Strategy Workshop

March 17, 2015

On March 1-3, 2015, approximately 45 top mental health professionals from around the world gathered in Bethesda, Maryland to discuss behavior and mental health in Prader-Willi syndrome (PWS). Slightly more than half of the group were experienced PWS clinicians or

Brain imaging shows structural differences between the PWS vs. non-PWS brain

March 6, 2015

It is well known that individuals with PWS often exhibit developmental delays and impaired cognition compare to typically developing peers. There is also evidence that those with PWS are at higher risk than the general population for mental health problems

Sleep Apnea In Infants and Children with PWS: Is a Sleep Study On Your "To-Do" List?

July 29, 2014

In a study from The Hospital for Sick Children, the authors recommend that all infants with PWS be screened for sleep disordered breathing (SDB) and receive oxygen treatment as needed. SDB is an area of great concern for the PWS

PWS at the FDA

June 22, 2014

On Tuesday, June 17, key leaders and scientific staff members at the FDA took time out of their busy schedules to learn about the serious challenges of PWS, to hear about our loved ones’ unmet medical needs, and to discuss

PWS iPS cells are helping researchers make breakthroughs

May 29, 2014

One of the exciting breakthroughs in PWS research in recent years has been the development of induced pluripotent stem cells or “iPSCs”. Although there is tremendous excitement among the scientific community about iPSCs, many parents, patients, and advocates still have

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