31 Jan

WBTV’s Molly Grantham features Elle

November 30, 2020 Charlotte based charity Bee Mighty raises money and hope for preemies. Elle, a twin, was not only born prematurely but also was diagnosed with Koolen-de Vries Syndrome. Read Molly Grantham’s social media post here. Read more of Elle’s story, as written by her mother, Christina, in her blog here.

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31 Jan

Meet Tom Kelsall, an amazing cyclist

Tom Kelsall, a teenager diagnosed with Koolen-de Vries Syndrome and Type 1 diabetes, has an amazing and inspirational story to tell. Remember his name and cheer him on as he reaches for his dreams of winning a gold at the Special Olympics. Read the full story on The Guardian.

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24 Sep

KdVS Foundation attends Global Genes Summit

Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in the rare disease community while sharing information about KdVS and a link to our new video (https://youtu.be/6mqYyJcQY50). We had a wonderful time attending the 2019 […]

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