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Research (9)

Demographics and Comorbidities Among Hospitalized Patients With PWS

January 18, 2023

Dr. James Luccarelli, a researcher at Massachusetts General Hospital, recently published a study summarizing the demographic characteristics and medical complications of individuals with PWS who were treated at acute care hospitals in the United States in the 4th quarter of

Watching for Mental Health Issues

January 5, 2023

Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares how to identify and treat serious mental health issues in our loved ones with PWS. Many people with PWS struggle with behavior challenges and can suffer with

New Gene Therapy Approach Improves Metabolic Function and Behavior in Mouse Model of PWS

December 7, 2022

A recently published paper explores a novel gene therapy approach for PWS, delivering a ‘growth hormone’ for brain cells, called brain-derived neurotrophic factor (BDNF). The study, Hypothalamic AAV-BDNF gene therapy improves metabolic function and behavior in the Magel2-null mouse model

Harmony Biosciences Announces Topline Results From Phase 2 Pitolisant Study

November 1, 2022

Today, Harmony Biosciences announced topline data on the primary outcome, excessive daytime sleepiness, from their Phase 2 proof-of-concept trial in patients with Prader-Willi syndrome, or PWS. The study included 65 volunteers, ages 6 to 65, who were randomized 1:1:1 to

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FPWR Announces Funding of $1.8M for Research Grants

October 28, 2022

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2022, exceeding $1,800,000. Representing the largest single round of funding in FPWR history, we are excited to fund a robust group of 14 grants that encompass projects

Introducing PADQ: a New PWS-Specific Measure for Anxiousness & Distress

October 18, 2022

Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, a new study examining sleep disorders, seizures, and psychiatric behaviors provides a great deal of valuable data and new insights into the relationship between these

Visiting PWS Researchers Inspires Hope

September 13, 2022

A special contribution by guest blogger Lisa Matesevac This summer, my family made our annual 15-hour trek to visit family in Buffalo, NY. This was a much-needed reprieve for our family as Evan, our teenage son with PWS, was recovering

D-dimer Study Yields Important Findings on PWS and Blood Clots

July 18, 2022

People with PWS have a higher risk for developing blood clots than the general population, but the risk is poorly understood. A recent study explored whether testing for a protein called D-dimer could be an informative tool for predicting blood

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People With PWS Share Their Hopes and Struggles In New Study

July 5, 2022

A tremendous amount of work has been done by The PWS Clinical Trials Consortium to understand and document the views of Prader-Willi syndrome families. Now, a new study validates what PWS caregivers have reported, by sharing first-person perspectives from people

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