Foundation for Prader-Willi Blog

FPWR

FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to bette...

August 12, 2020 Read More

Topics: Research

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...

August 11, 2020 Read More

Topics: Stories of Hope

Dr. Theresa Strong Joins Scientific Advisory Board of Saniona

FPWR works closely with several clinical trial sponsors in order to help companies understand the medical needs and challenges of PWS, provide input into study protocols and educate the community about trial opportunities. Most recently, FPWR Directo...

June 3, 2019 Read More

Topics: News

PWS Clinical Trial Webinar: Mindfulness for Temper Outbursts in PWS

A new study is now enrolling people with PWS ages 13 to 30 years old and their caregivers to participate in a study to evaluate the use of Mindfulness-based intervention for the treatment of temper outbursts. A live webinar was conducted May 6th whic...

May 7, 2019 Read More

Topics: Research

A glimpse into the life of a high school senior, who also has PWS.

Gillian Segall is an 18-year-old high school senior from Chicago, IL who happens to have PWS. We asked Gillian to tell us a bit about her life as a high school senior and her plans for afterward. Graduating from high school is something that many kid...

April 22, 2019 Read More

UConn and FPWR Create Stem Cell Biobank for PWS

A new collaboration between UConn Health and the Foundation for Prader-Willi Research will create a centralized, high quality biobank of stem cells to help researchers better understand Prader-Willi syndrome.

April 11, 2019 Read More

What We Are Learning from the PATH for PWS Study

[Ed. note April 2, 2021: The PATH for PWS Study is no longer open for enrollment.] PATH for PWS: Paving the Way for Advances in Treatments and Health People with PWS are at a greater risk of health complications and serious medical events than indivi...

April 5, 2019 Read More

Topics: Research Blog