2015 – July 9-11, Asheville, North Carolina

A USA Koolen-de Vries Syndrome gathering was held July 11, 2015 in Asheville, North Carolina. Many families arrived a few days early to attend additional fun activities. Ted and Stephanie Needham hosted the gathering and it was clear that they spent a lot of time fundraising and planning to host a huge number of families. Around 65 individuals with KdVS and their families and extended families came together for fellowship, forging new friendships, sharing information, and meeting a number of doctors and specialists. Everyone was honored to have Dr. Koolen and Dr. de Vries travel from the Netherlands to spend a number of days visiting, answering questions and taking lots of pictures!

On Thursday, families were able to visit a nearby Cherokee reservation where a visit to their museum, lunch and a Cherokee dance presentation and entry into a Cherokee village experience was all provided at no cost to the families. On Friday, many families spent the day at Dollywood seeing shows and riding rides and having a fabulous experience.

A number of doctors and specialists attended the gathering including a pediatric neurologist, sleep specialists, an ophthalmologist, a nurse discussing puberty and special needs children, and an IEP expert/advocate. Dr. Koolen and Dr. de Vries presented on Saturday night and they were able to answer a number of parent questions. Saturday was the main gathering day – and it was a busy and fun-filled day complete with a movie at a theater, a group picture, bounce houses and slides, balloons, face painting, ice cream, prizes and treats for all the children, and a free lunch for the huge crowd.

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