2014 CLS Family Gathering – Augusta, Georgia
2014 COFFIN LOWRY SYNDROME FAMILY GATHERING – Mary & Sam Painter, 2014 Host Family
The first CLS Family Gathering began with a crazy dream about a National Meeting where parents could get encouragement and support, and kids could meet other kids with CLS. This became an ongoing conversation between friends who met online through the CLSF. Dianna Garvin and Mary Painter had sons with CLS about the same age and longed for them to be able to meet each other in person one day. Unwilling to wait for an organization to sponsor something like this, they finally decided it was up to them to make the meeting happen. Dianna (with her good friend Rose Herbert) and son, Tom, agreed to travel from Indiana to Georgia to meet the Painter family and their David. On a whim, Mary asked Dianna if she would mind if she asked other families if they wanted to come. Dianna said, “It’s your house!” Expecting that maybe one or two others might come, Mary posted the invitation in the online forum. Six other families said they would come! Mary then scrambled, and with help from her friends and church, set up lodging arrangements, meals, and activities for a weekend of fun.
As the families arrived, never having met each other, their kids instantly bonded with each other. They were inseparable all weekend. There was swimming, face-painting, games, and an outing to the baseball game. It was as if we were at a family reunion meeting family we didn’t know we had. We shared our stories and our love for our kids, and by the end of the weekend, our love for each other. Our sons built incredible friendships that we had never dared dream possible. Roxann Taylor, one of the parents in attendance, volunteered on the spot to host the next gathering in Florida.
From this core group of parents, a grassroots effort to see it continue and grow was realized. Because of the family dynamic that was so evident to us that first weekend, we decided to call them Family Gatherings rather than Annual Meetings. As the first host, Mary says that she is still amazed by the courage shown by the families who traveled so far to spend the weekend with someone they had never met before, and considers it perhaps the greatest gift she has ever received. Their contagious desire for connection became the fuel that started something bigger than any of us ever expected or thought possible on our own, and that inspired other parents to join in the effort and support ongoing Gatherings.
This was the first official gathering of families with CLS held in Augusta, Georgia, USA in 2014. There were 8 families representing 9 people with CLS. It was a game changer for the families in attendance, and it’s success paved the way for future gatherings in the US, UK, and AUS.
