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Research (8)

PWS Registry Data: Mental Health Therapies

March 6, 2023

As a rare disorder, PWS is most well-known to the medical community and general population for hyperphagia, or intense food-seeking behavior. However, family members, caregivers, and individuals with PWS know that behavior difficulties and mental health can often impact quality

Medical Devices Offer New Opportunities to Alleviate Symptoms of PWS

February 22, 2023

FPWR is investigating several devices that have been proven effective in treating a myriad of symptoms associated with other medical conditions & have considerable potential to relieve symptoms of PWS. Devices offer many advantages including an expedited timeline from proof-of-concept

Can Breakthrough Obesity Drugs Wegovy and Tirzapatide Deliver in PWS?

February 7, 2023

You’re probably seen at least one headline heralding the remarkable successes of Wegovy or Tirzepatide for the treatment of obesity. Clinical studies have demonstrated that in trial participants with general obesity, tirzepatide results in an average body weight loss of

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

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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