As we landed in St. Louis very early on Thursday morning, another PRISMS conference was about to begin. This organization, founded by parents and researchers over 20 years ago, has created an amazing atmosphere where parents, kids diagnosed with SMS (Smith-Magenis Syndrome), siblings and researchers convene to educate, fellowship and enlighten each other on how to work with loved ones living with this rare genetic disorder.
We arrived at the hotel looking forward to seeing familiar faces and meet newly diagnosed families. We both agreed that it was worth the effort to attend this conference when we received exciting news from an anonymous donor letting us know that they wanted to contribute so that two families could win The Safety Sleeper at the conference’s raffle. This was in addition to the one we already committed to donating.
The overwhelming feeling of gratitude and love for this community swept us throughout the entire weekend.
Families who had already purchased our product came up and willingly offered testimonies about it. Moms who have used it for several years were educating new families on our product and how they can travel AND sleep when they aren’t at home. The kids and adults with SMS would regularly come over and ask to help us, get in the bed, read our name tags and ask me why my last name was so funny (thanks, hubby!).
Here were three highlights of our weekend:
- Facetiming with former Pro-Bowl Steeler Kendell Simmons so that Sonja, an adult with SMS, could let him know how much she loved the Steelers.
- Celebrating with the 3 families that each won The Safety Sleeper via the raffle drawing.
- Having Laura, another adult with SMS who has an overwhelming fear of cameras, join in the picture taking joy at the end of the weekend.
At the end of every trip that we take as representatives for The Safety Sleeper, we are happy to share information about our product and what makes it useful, but this weekend our mission and vision came to life.
We truly saw families gain an understanding of the peace and security that comes from the assurance that their loved one is safe and secure.
We talked to caregivers that are now relieved of their anxiety and ready to face the next day’s challenges well rested.
We are thankful every day that we can help one more family.
We were welcomed back home from the PRISMS Conference with an incredible story waiting on us about Chris, a second grader diagnosed with SMS. Read his mother’s touching words about what makes Chris special.
And don’t forget to watch our video!