Soleno’s Community Day took place in Los Angeles on Saturday, July 25. I attended the event in hopes to see some of our incredible PWCF families and in hopes to possibly meet new families that had not touched base with us before. The event a good turnout for both parents and individuals with PWS that were part of their youth program for the day. Soleno partnered with Corporate Kid Events (CKE) for their Community Day events. CKE is a nationwide childcare service that specializes in working with children with specialized needs, including PWS. They spent the entirety of the presentation time with the kids and the kids had an absolute blast!
The actual presentation portion was incredibly fruitful. We started with an icebreaker activity where the parents were given the opportunity to share some of their thoughts in regards to various topics regarding PWS. This was the catalyst for parents to share their personal stories and thoughts regarding the care of their loved one. As someone who doesn’t have a loved one with PWS in their family, a lot of these stories were very eye-opening for me and provided insight for what it’s like to live with someone that has PWS on a day-to-day basis. It isn’t an everyday occurrence that you get to learn more about everyone’s daily routine.
After this segment, we received a presentation from Dr. Scott Clements. He educated the families on VYKAT XR and what to expect if you’re a new family starting the treatment for the first time. It was great to hear a digestible version of this information and the integration of a parent advocate was really important for other parents in the room to feel seen. Truthfully, I can imagine that parents who haven’t started the medication are likely nervous to start due to all of the stories heard around the community regarding side effects or the effectiveness of the medication. Dr. Clements touched on all of that and clarified a lot of the common worries with this medication which can be of great help to families that may be on the fence.
To close the event, we ended with a guided breathing exercise that lifted the weight of the day from our shoulders and sent us home feeling lighter than when we came in. Overall this event was a wonderful experience and I hope families in Northern California can take advantage when the next one happens on August 8th. If you’re interested in attending, please RSVP to that event here: https://www.surveymonkey.com/r/PWS_SanFran