In September over 180 people from the CdLS community attended the first Regional Retreat hosted by the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive, and medical challenges.
The event, held at Camp Saginaw, was a recreation of the foundation’s biannual conference put on hold in 2020 due to COVID-19.
The new event was envisioned to include every family member – from grandparents to siblings.
The retreat hosted four workshops, a sibling camp, meet the experts – where parents or caregivers could meet with an expert in any specialty they needed to meet with (genetics, behavior, etc.) to have their questions addressed, and special groups for moms, dads, and grandparents.
Many families commented that it was the first time they saw another child that looked like their own.
One parent, Kristina K., commented, “Thank you to everyone involved in making this an unforgettable weekend! Shane, Frank, and I had so much fun and met other wonderful families that we will keep in touch. Thank you for making it all happen!”
Each evening there was a campfire so families and professionals could gather and spend time together. This event forged new friendships and bonded the CdLS community together.
To learn more about the CdLS Foundation or to donate, visit www.CdLSusa.org or call 800.753.2357.
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