The Soleno PWS Community Day at the Children’s Discovery Museum of San Jose was a wonderful gathering. We had 25 parents, family members, and caregivers gathered for the main sessions while 20 of our kids and young adults were in the next room. It seemed like everyone had a good time in both rooms. We began by using icebreaker questions that helped focus the discussion and connect the parents and other caregivers around the tables.
The keynote speaker was Dr. Diane Stafford, who spoke about VYKAT-XR. Dr. Stafford specializes in Pediatric Endocrinology with a special interest in disorders of puberty and Prader-Willi syndrome (PWS). Dr. Stafford has a gift for explaining seemingly complex medical and scientific concepts at a level where all can easily understand, while keeping it very interesting to listen to. Along with the parents of a young lady with PWS who is on VYKAT-XR, Dr. Stafford gave an overview of VYKAT-XR, covering topics such as its history, trials, application, advantages, and potential side effects. The presentation and Q&A session were very informative and helpful.
Our session closed with interactive activities for caregiver self-care, focusing mainly on simple, but powerful, breathing techniques, strategies, and situational applications. These are easy, accessible, practical, and beneficial tools to have.
I have had contact with several people from Soleno at this event and others over the past couple of years. Every person has sincerely focused on investing in and serving the PWS community, supporting many PWS-related events and activities, and creating opportunities to enhance community relations among people with PWS and their families.
Submitted by Vince Godfrey, PWCF Board of Directors President