109% of $100,000 goal
Evidence from FPWR-supported studies show that Vagus Nerve Stimulation (VNS) may reduce temper outbursts and other disruptive behaviors in individuals with PWS. With your support, FPWR is taking the steps needed to advance a clinical trial of a VNS device with the aim of making this treatment available for our loved ones with PWS.
When you fundraise or donate to our VNS for PWS campaign, 100% of your efforts will be used to support our VNS for PWS clinical trial.
Temper outbursts and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family. Affecting between 60 to 80% of people with PWS, temper outbursts are a major cause of family stress and have a detrimental effect on the quality of life of both the person with PWS and their family.
VNS uses brief electrical impulses to stimulate areas of the brain that are important for controlling emotions and behavior. VNS has been approved by the FDA to treat epilepsy and chronic recurrent depression. Now, new evidence supports the use of VNS to reduce temper outbursts and improve disruptive behaviors in individuals with PWS. The approach has been studied in a small number of PWS individuals in the U.K. with a significant reduction in both the number and severity of temper outbursts.
FPWR is working to execute a multi-center VNS clinical trial in the U.S. with the aim of making this device available for our loved ones with PWS. The trial will enroll approximately 50 participants with a confirmed diagnosis of PWS and a history of behavior outbursts. Study participants will wear the t-VNS device daily for the duration of the study and a parent or caregiver will provide daily behavior data through an online trial application. Study results will be used to establish VNS as a treatment for temper outbursts in PWS.
VNS has the potential to be transformative for people with PWS and their families. This trial is the essential next step to making this treatment accessible to our community. Thank you for supporting this effort!