2022 CLS Family Gathering – Huntsville, Alabama
2022 COFFIN LOWRY SYNDROME FAMILY GATHERING – Theresa and Larry Moxley, 2022 Host Family
In 2019 while attended the Coffin Lowry Syndrome (CLS) US Family Gathering in Fayetteville, NC Larry and Theresa agreed to host the next event to be held in the summer of 2020. Fundraising and planning efforts began for the event. We were well into 2020 when in March, the pandemic hit and hosting the family gathering in June 2020 was no longer a possibility. The gathering was postponed until June 2022 two years after the original plan.
35 families from 20 different states and two other countries (Mexico and Scotland) attended the event held at the Huntsville Marriott at the Space and Rocket Center. These gatherings are very important to the families because many have never met another person with the same syndrome. The families were welcomed on Thursday and then Friday morning we toured the US Space and Rocket Center for most of Friday. Friday evening saw us hosting a pizza party along with an epic pool party. So fun! We had a host of volunteers entertain the kiddos while the parents and caregivers attended sessions on Parent advocacy, setting up a Special Needs Trust while finishing out the morning with a Parent Panel discussing a variety of topics. Afternoon activities for the Moms included chair massages and a craft activity while the Dads enjoyed a few hours at Top Golf. Saturday evening concluded the organized activities with a southern themed dinner and the traditional CLS Dance party to include a DJ and Photo booth. Fun times indeed!!
Special thanks to the Coffin Lowry Syndrome Foundation, Huntsville Marriott Space and Rocket Center, the US Space and Rocket Center, Jayne Chase our Keynote speaker, and our major sponsors: Vector Wealth Strategies, Hammer and Stain, Short Stop Screen Printing, QTEC, Northrop Grumman, Thompson Gray, Collins toothbrushes, Chubbies, Snapshots by Mike Photo Booth, Billy Brasfield DJ, Huntsville High School Drama department, Empty Nester, Huntsville Fire department, Therapy Partners. Also thank you to many, many friends for their support in making this event so special!
