A Weekend Oasis…every two years
Where would you go to find kids randomly laying on the floor, suction machines and vents whirring in the distance, chewy tubes in all colors, feeding tubes and pumps, walkers, hearing aids, interpreters and every imaginable kind of wheelchair…a hospital? No, a weekend oasis where all of the above and more is the norm. Welcome to the 12th Bi-Annual International CHARGE Syndrome Conference. 1,200 people consisting of individuals with CHARGE, families, caregivers and professionals spending 4 days of fun, education and relaxation. A time to reconnect with old friends, finally meet face-to-face with “cyber” friends and a time to make new friends, all while learning more about this rare genetic disorder that has so profoundly impacted all of our lives. The CHARGE Conference is not about professionals talking AT you…it is about professionals who care so deeply that many of them have devoted their entire careers to study, observe and wrap their entire lives around our kids, teens and grown-ups who have been impacted by CHARGE Syndrome. It is not uncommon to see these professionals rolling on the floor with our kids, eating meals and spending most, if not all of their free time at Conference with the families, collecting data for research from their hotel rooms and answering questions about “how-to’s” and “what-to’s” pertaining to our kids into the wee hours of the mornings. Speaking as a parent, the time spent at Conference is a brief moment in our lives where we don’t have to explain, make excuses or apologize on behalf…
Read more