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April 2021

Webinar with Dr. Koolen

April 30 @ 12:00 pm - 1:00 pm

On April 30th at 12:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. David Koolen. If you have a question to ask Dr. Koolen, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows. Registration link below!  

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May 2021

Webinar with Dan Morreale

May 13 @ 1:00 pm - 2:00 pm

On May 13th at 1:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan will be discussing Individual Education Plans (IEPs) and planning for a successful school year. If you have a question to ask Dan, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows. Registration link below!

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Family Zoom Meet Up

May 23 @ 5:00 pm - 6:00 pm

Join us for a virtual meet up of Kool families on May 23rd, 2021 at 5 pm ET. We had a great time on our first Zoom meeting and families attended from all over the world. Attendees will be divided into smaller break-out rooms to allow easier networking. We would love to meet you!

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June 2021

Webinar with Dr. de Vries

June 25 @ 11:00 am - 12:00 pm

Coming up on June 25th at 11am EDT, don't miss a conversation with Dr. Bert de Vries, clinical geneticist from The Netherlands, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals. Register here: https://bit.ly/3uEAB1j 

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July 2021

2021 VIRTUAL KdVS Patient Advocacy Summit

July 14 - July 16

Click on the registration button above to browse the agenda and speakers and to register! When can I register for the Patient Advocacy Summit? How much will registration be? What is the schedule? Will recordings be available to view?

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Kool Kampaign 2021

July 17 - September 17

The Koolen-de Vries Syndrome Foundation is proud to sponsor the 2021 Kool Kampaign for Research. 100% of the donations received will be used to fund KdVS research projects. We are using an online peer-to-peer fundraising platform that we are asking families to share with their friends (via email, social media, etc). Money can be raised through a variety of means...just by sharing your fundraising page, but also through small events like lemonade (or maybe kool-aid?!) stands, restaurant give-backs, bake sale,…

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August 2021

KdVS Zoom Happy Hour

August 22 @ 8:00 pm - 9:00 pm
KdVS Zoom Happy Hour graphic

Join us Sunday, August 22, 2021 from 8-9 pm EDT for a virtual happy hour! Register using the link and come ready to visit other families.

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September 2021

KdVS Connect – Behavioral Challenges

September 19 @ 8:00 pm - 9:00 pm

Calling all KdVS caregivers! Our zoom topic of the month is "Behavior Challenges, Anxieties, Phobias, and Repetitive Behaviors". What has been challenging and how have you handled it? Register through the zoom link below to meet with other KdVS caregivers on September 19 from 8-9 pm EDT. What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories and to give and receive support. Each…

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October 2021

KdVS Connect – Emotional Support Group

October 10 @ 8:00 pm - 9:00 pm

Join us October 10, 2021 at 8 pm EST for KdVS Connect. This month's zoom call is an Emotional Support Group. Topics to discuss will include: What has been hardest about being a KDVS parent? How do you cope? What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories and to give and receive support. Each month the discussion topic will change!

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November 2021

KdVS Connect – Epilepsy Discussion and Support

November 20 @ 12:00 pm - 1:00 pm

Join KdVS Connect's monthly Zoom call to discuss all things epilepsy! Approximately 50% of individuals diagnosed with Koolen-de Vries Syndrome are also diagnosed with epilepsy. On November 20, 2021 at 12:00 pm EST, parents are invited to share their child's epilepsy journey and learn from the experiences of other families. Get support, give support! What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories…

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