2024 Family Gathering – Toledo, Ohio
2024 COFFIN LOWRY SYNDROME FAMILY GATHERING – Jodi Heisler & Sue Pickens, 2024 Host Family
After many months of ZOOM meetings, receiving guidance from those who had hosted previous family gatherings and brainstorming, it all came together!
The 2024 CLS Family Gathering welcomed families August 8-11th to the Hampton Inn in Toledo, Ohio. 32 families attended from all corners of the US as well as 3 families from Canada. We welcomed them because our children have been diagnosed with a syndrome most of us had never heard of but hoped we could learn from each other!
Most families arrived on Thursday. We welcomed those who had attended other gatherings and many new families who came to a family gathering for the 1st time.
Friday after a great breakfast we headed to the TOLEDO ZOO and Aquarium. We enjoyed a beautiful day and a great lunch on site. There was so much to see and do and an enjoyable day was had by all! Friday evening, we had a PIZZA PARTY at the hotel and had some social time visiting with new and old friends!
Saturday morning, we met at the Schaller Event Venue to listen to speakers about Augmentative Communication options, Speech and Language supports, Music Therapy and Occupational Tips /Tricks to facilitate fine motor skills. Parents had time to ask questions and learn about the
support that many of our kids need! Saturday night we all met to dance the night away! We had
a Taco buffet for dinner, a DJ played tunes and took time to visit the Photo Booth to create memories, smiles and laughter! The night was capped off with an ice cream bar!
Special thanks to all those families who helped throughout the weekend.
Sunday we all said our good-byes and hugged our old and new CLS families. Some headed home while others set out for extended vacations.
Jodi, Josh and Sue were honored to host this event, and it is their hope that each family shared their experiences and expertise about their CLS journey. Experience is the best teacher and together with our medical community, fellow families, the CLS Foundation and connections we made during the weekend we all benefit.
Thanks to the CLS Foundation and donors for making this weekend possible!
