News Archives - Koolen-de Vries Syndrome Foundation

22 Jun

$100,000 Grant Awarded

For Immediate Release June 22, 2021 Koolen-de Vries Syndrome Foundation Awards $100,000 Grant to Post-doctoral Fellow for Further “Brain-in-a-Dish” Research WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation recently awarded a $100,000 post-doctoral fellowship grant award to post-doctoral fellow Dr. Brooke Latour for her work in neural development and neurodevelopmental disorders, and how it relates […]

3 Jun

Navigating Life with Koolen-de Vries Syndrome

Ethan Deremer is 23 years old and was diagnosed with Koolen-de Vries Syndrome in 2014. He recently submitted a short essay and was featured on the Our Odyssey website. Our Odyssey connects young adults who are impacted by a rare or chronic conditions with social and emotional support in the hope of improving their quality […]

18 May

KdVS Foundation hosts a webinar with Dan Morreale

On May 13th, Koolen-de Vries Syndrome Foundation hosted a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan discussed Individual Education Plans (IEPs) and planning for a successful school year. Viewers of the webinar submitted many outstanding questions and Mr. Morreale was able to answer as many as time permitted. Missed the webinar? […]

2 May

KdVS Foundation hosts webinar with Dr. Koolen

On April 30th, the Koolen-de Vries Syndrome Foundation hosted a webinar with Dr. David Koolen. There was an amazing turnout of viewers both on the Zoom call and following the live stream on our Facebook page. Dr. Koolen shared information about the syndrome and answered many questions submitted by KdVS families. Missed the webinar? Catch […]

1 Apr

Pawsitive Warrior Spotlight

Kool Miranda along with her service dog, Natasha, was featured on Shane & Pepper Soy Candle Company’s monthly newsletter. Six year old Miranda received Natasha through 4 Paws for Ability, an organization that trains service dogs for veterans and children. Credit to: Shane & Pepper Candle Company (shaneandpeppercandleco.com)

15 Feb

KdVS Foundation hosts webinar with Dr. Myers

On February 10, 2021, Koolen-de Vries Syndrome Foundation hosted a webinar with Dr. Ken Myers, pediatric epileptologist, discuss epilepsy and KdVS. He shared an excellent presentation and answered many questions submitted by KdVS families.

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.

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.

14 Dec

Fall/Winter 2020 Newsletter

The Fall/Winter 2020 Koolen-de Vries Syndrome Foundation newsletter was emailed on December 14, 2020. Did you miss it? Not to worry! Features include: Meet our new Board President Feature article on Constipation from Medical Advisory Board Member and Kool Dad, Dr. Russell Zwiener Board Member Spotlight Kool Kampaign update Patient Advocacy Summit update

2 Dec

KdVS Foundation hosts webinar with Dr. Kasri

On Thursday, October 29, we hosted a conversation with Dr. Nael Nadif Kasri to discuss the latest research on stem cells and drug therapy. Over 100 people attended the webinar live through Zoom or on Facebook Live. We are very fortunate to have involved and personable researchers that care about KdVS research and our community. […]