Most of us are not trained educators, yet with COVID-19 closing schools around the country and many of us are facing distance learning for the remainder of the school year. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Res...
An Update to the Prader-Willi community from Harmony Biosciences: As you may know, the team at Harmony has been working toward initiating a Phase 2 clinical trial to assess the safety, efficacy and appropriate dosing of pitolisant in treating some of...
A special contribution by guest blogger Felicia DiMuccio Growing up, I was never quite sure what I wanted to be, but I always knew I wanted to be a mom. Finding out I was pregnant with Siena was a dream come true, and I couldn't wait for her to enter...
Topics: Stories of Hope
Today we received disappointing news from Millendo in regards to their Phase 2 study of Livoletide in PWS (Zephyr). Unfortunately, results from the trial do not show the significant improvements in hunger that we had all hoped to see and Millendo has...
In our latest podcast, Patrice Carroll, Director of PWS Services at Latham Centers in Cape Cod, shares how to how to help our loved ones with PWS through this unusual time of social distancing and isolation due to COVID-19. To listen, just click abov...
Topics: Research
COVID-19 has turned all of our lives upside down. These times can be particularly challenging for our loved ones with PWS who rely on routines and schedules. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, s...
Topics: News
In our latest podcast, Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares tips on how to stay calm and manage anxiety during COVID-19. To listen, just click above, or read below for a list of tips to start using tod...
Topics: Research
You won’t want to miss these speakers at the 2020 Virtual PWS Family Conference, October 6–9. Inspiration, hope, people who get it — that’s the 2020 Virtual PWS Family Conference! At this free virtual conference, you can join like-minded game-changer...
Topics: News
Soleno therapeutics recently completed enrollment of their ongoing Phase III Clinical trial, DESTINY PWS, and is expecting to announce top-line data the first half of 2020. The study is evaluating once-daily Diazoxide Choline Controlled-Release (DCCR...
Topics: Research
