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Your Voices: Josh's Story

My son, Josh, was born in July 1989 and diagnosed at about five months old. We received the diagnosis and a pretty scary early publication from the Foundation on a Friday and I was on the phone with the Foundation the following Monday morning. The information about CdLS at that time was pretty grim, but the relief I found in simply knowing there were caring people and a way to connect with others gave me hope. 


We attended our first national family conference in Boston (I believe Josh was about 18 months old). It was the first time we had seen any children with CdLS, and it was both overwhelming and wonderful. One of the first families we met was the Smisloff's, whose son, Will, was slightly younger than Josh. I felt an immediate bond with Beth and we've been in contact since then. We attended numerous family conferences including traveling to the UK for a joint international conference. We even started serving on the CdLS Foundation's Board of Directors in the same class, in 2011, and our second terms end this year.

My family was very supportive and we became more involved as time went on. My sister designed the building block logo that the Foundation used for years, and my parents provided funds for a couple of the Grandparent gatherings at Conferences. Somewhere along the line I started to help with some writing/editing type things, I don't remember when. I was part of the Volunteer Planning Committee for the Philadelphia Family Conference, which was actually held in Cherry Hill, NJ. I was also asked to become a part of the Public Affairs Committee, on which I still continue serve.

The friendships I have developed with other families and wonderful board and staff members will always be in my heart. Serving on the board has been its own magical experience, not just the good work getting done, but after meeting gatherings and dinners full of stories and laughter. I've had great adventures in Golden Gate Park with Shelly Champion, touring St. Louis with Charlie Madrid and an almost three-hour car tour with Dianne when we got hopelessly lost returning from a family event after the board meeting in Orlando, and laughed till we almost cried. 

The Foundation's family conferences are the fondest memories; from the consults to the information sessions to the instant bonding you experience when you're with people that totally understand and are living your life.


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