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Harmony Biosciences releases a statement to the PWS Community

A recent report from Scorpion Capital, a financial research group that specializes in 'activist short selling', makes several allegations about potential side effects of the drug Wakix (pitolisant), which is currently being evaluated in a clinical tr...

Topics: Advocacy

Managing Behavior and Mental Health [2022 CONFERENCE VIDEO]

In this one hour and 9-minute video, Elizabeth Roof, Dr. Lauren Schwartz, and Dr. Deepan Singh explore behavior strategies and mental health issues in people with PWS. 

Topics: Mental Health, Behavior

A Link Between Exercise Motivation and the Gut Microbiome

Do you ever wonder why you’re so strongly motivated to exercise while it seems that some others inexplicably aren’t?  The answer may lie in the differences between your gut microbiomes! Nature, the world’s leading multidisciplinary science journal, r...

Topics: Research

PWS Registry Data: Mental Health Therapies [INFOGRAPHIC]

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 hea...

Topics: Research

“She Is Tough, She Is a Fighter” Says PWS Mom Inspired by Daughter

A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.

Topics: Stories of Hope

Medical Devices Offer New Opportunities to Alleviate Symptoms of PWS

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 e...

Topics: Research

Orthopedic Challenges and Treatments in PWS [2022 CONFERENCE VIDEO]

In this 2-hour and 2-minute video, Dr. Harold van Bosse, a pediatric orthopedic surgeon at SSM Health/Saint Louis University/Cardinal Glennon Children’s Hospital, and Dr. Nora Wagner, an APTA board certified pediatrics clinical specialist, discuss or...

Topics: Therapeutic Development

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

UPDATE, FEBRUARY 2023: FPWR is preparing to launch our VNS4PWS clinical trial. Details of the study protocol are currently being finalized and we are beginning discussions with potential trial sites. We plan to begin enrolling volunteers mid-2023. Re...

Topics: Research

Top 10 Reasons to Attend the 2023 PWS Family Conference

Join us October 6-October 7 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference!  Here are the top 10 reasons you need to be there:

Topics: News