PWSA Blog

Levo Therapeutics Announces Top-line Results from Phase 3 CARE-PWS Study of LV-101 (Intranasal Carbetocin) for the Treatment of Prader-Willi Syndrome

CHICAGO–(BUSINESS WIRE)–Levo Therapeutics, Inc., a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome (PWS) and related disorders, announced today top-line results from the Phase 3 CARE-PWS clinical study evaluating LV-101 (intranasal carbetocin) for the treatment of PWS. This syndrome is a complex, neurodevelopmental disorder that occurs in approximately 1...

Sibling Caregivers

Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often...

Grandma Lee: A Poem by Spencer Ginyard

This poem was submitted by Spencer Ginyard, a young man who has Prader-Willi syndrome. Spencer recently graduated from Cal State University, San Bernardino where he received a bachelor’s degree in English with an emphasis in creative writing. He is an honors recipient from Delta Alpha Pi Honor Society.   To my Great Grandma, Grandma...

Surviving Quarantine as a Sibling

Siblings of individuals with Prader-Willi syndrome (PWS) are at an increased risk of developing emotional and mental health problems. According to the 2019 study on PWS sibling well-being, participants showed incredibly high rates of distress and lower than average resilience (Murphy, Thornton & Thornton, 2019.) The outbreak of COVID-19 and subsequent quarantine may make...

Running for Research

PWSA | USA is happy to announce its partnership with Running for Research, a diverse group of runners dedicated to raising funds for the Prader-Willi Syndrome Research Fund at the University of Florida and Dr. Jennifer Miller’s work to identify effective treatments for children and adults with Prader-Willi syndrome (PWS). Since its founding in...

Tips for Improving the Well-being of Siblings of Individuals with Prader-Willi Syndrome: Debriefing

Siblings of individuals with Prader-Willi syndrome (PWS) are exposed to a traumatic and stressful environment. Offsetting this exposure with positive experiences and therapies often help siblings get through these hardships. Siblings of individuals with disabilities are often diagnosed with post-traumatic stress disorder (PTSD), anxiety, and depression tied to the stress in the family.1 In...

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