Alayna, Author at Koolen-de Vries Syndrome Foundation

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, […]

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 […]

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. […]

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 […]

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 […]

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 […]

3 Sep

Koolen-de Vries Syndrome Foundation Announces a New President of the Board of Directors

September 3, 2020 Contacts: Ashley Point, 704/342-1445, [email protected] Patty Tiberg, 817/905-1360, [email protected] Wilmington, NC-The Koolen-de Vries Syndrome Foundation (KdVSF), whose mission is to educate, increase awareness and promote research for […]

1 Mar

A View into Koolen-de Vries Syndrome

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 […]

18 Sep

Our Very Favorite Syndrome!