2015 – July 9-11, Asheville, North Carolina

Gathering of Koolen-de Vries Syndrome families in 2015

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.

Gathering of Koolen-de Vries Syndrome families in 2015
2015 Koolen-de Vries Syndrome Gathering – Asheville, NC, USA

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.

Do you have photos from the event that you’d like to share? Please use our Contact page to let us know! We’ll contact you to get the photos and add them to the site.

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