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:
The Global PWS Registry launched in 2015 as a central repository of caregiver and patient entered data about living with PWS. The goals of the Registry are to better understand the full spectrum of PWS symptoms, expedite the completion of PWS clinica...
Topics: News
You’re probably seen at least one headline heralding the remarkable successes of Novo Nordisk’s drug Wegovy (Semaglutide, 2.4 mg) and Eli Lily’s tirzepatide (currently only approved for type 2 diabetes – likely to be approved for weight loss later th...
Topics: Research
A special blog contribution from Sheri Mills. Sheri shared her story via our Stories of Hope Questionnaire.
Topics: Stories of Hope
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 Stat...
Topics: Research
In this one hour and 17-minutevideo, Dr. Theresa Strong and the FPWR research team explore recent research breakthroughs and emerging standards of care for PWS.
Topics: Research
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.
Topics: Research
In this one-hour video, Dr. Diane Stafford, Pediatric Endocrinologist at Stanford University, discusses standards of care for patients with PWS across the age continuum, including medical needs, currently available medications, supplements, and behav...
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 b...
