7 Aug

Van Berg and his mother Eugenia Kim featured in a video series by the Youth Transitions Collaborative.

We are pleased to share the following video featuring Van Berg and his mother, Eugenia Kim. Van is 26 years old and was diagnosed with Koolen-de Vries Syndrome in 2007. This video is part of a video series by the Youth Transitions Collaborative about work-based experiences for people with special needs transitioning to adulthood.  

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7 Aug

Hayley’s Journey from Special Olympics to Carolina Cup

Check out this inspiring article about Hayley, who has Koolen-de Vries Syndrome and her Paddle boarding journey.

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7 Aug

Kool Kid Colby demonstrating his communication device.

Kool Kid Colby Tiberg demonstrates how he used his communication device in the classroom.

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7 Aug

Kool Katie models in the Runway of Dreams Fashion Show

Check out these photos of Kool Katie modeling in the Runway of Dreams fashion show. Her photo can also be found in the June 13, 2016 issue of People Magazine.

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7 Aug

Kool Kid Colby with Western Wishes in People Magazine

Kool Kid, Colby, was featured in a photo shoot for Western Wishes Founder, Donnalyn Quintana that was featured in the June 17, 2013 issue of People Magazine .

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7 Aug

Alyssa’s Purple Eagle Day with FedEx

Check out this amazing story about Kool Alyssa. Alyssa had a FedEx Cessna Caravan airplane named in her honor during her Purple Eagle Day.

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7 Jul

2016 – July 7-9, Columbus, Ohio

The 2016 Koolen-de Vries Syndrome Gathering was held in Columbus, Ohio, July 7-9, 2016. The gathering was predominately a social event with lots of time for networking and visiting with other KdVS families.

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11 Jul

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. […]

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9 May

2015 – May 9, Lea Green, Matlock, Derbyshire

An informal KDVS Europe gathering is planned for May 9, 2015. If you are interested, please contact Mandy at mhazelgrave@aol.com. Check out this link for more details. 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 […]

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19 Apr

2015 – April 17-19, Gold Coast, Queensland

In April many Australian KdVS families came together for a fun filled weekend on the Gold Coast. Queensland. The Gold Coast is situated in South-East Queensland and was easy for families to access with 2 major airports at Brisbane and Coolangatta. A total of 12 families (45 people) attended the fun 3 days and there […]

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