Past Events Archives - Koolen-de Vries Syndrome Foundation

5 Dec

University of Maryland Brain & Tissue Bank

Did you miss our Research Chat with the KdVSF CSO webinar? Don’t worry – it’s available to view on YouTube! Use the link below to hear our CSO Dr. Anna […]

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 […]

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 […]

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 […]

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 […]

17 Nov

Concert Raises Awareness

This year, the KdVS Foundation welcomed the Speirs family into its global KdVS community. Andy and Virginia Speirs studied harp and cello performance at the University of Utah. Excited about […]

4 Nov

Dr. de Vries runs marathon

The Koolen-de Vries Syndrome Foundation and The Kool Kid Alliance are thrilled to have had the support Dr. Bert de Vries as he ran the New York City Marathon on […]

15 Jul

Families Gather in Omaha, Nebraska

July 2018 saw 32 KdVS families gather in Ohama, Nebraska, USA. Hosted by Nicholle and Tony Reisdorff from Papillion, parents to Seth, along with Leslie and Neal Deremer from Nebraska […]

26 Mar

2018 – Australian KdVS Family Gathering

Australian KdVS Family Gathering Where: Novotel Twin Waters Resort, Sunshine Coast – Queensland, Australia. Click here to view resort website. When: October 11th – 14th 2018 All enquiries to Andrea Smith Phone: +61 407 675 630 […]

13 Jul

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, Tennessee July 13 – 15, 2017 The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in […]