Kool Kampaign

About the Kool Kampaign

The 2022 Koolen-de Vries Syndrome Foundation Kool Kampaign kicked off on July 17, 2022. All money raised during this two-month Kampaign directly benefits research into Koolen-de Vries Syndrome (KdVS). The KdVS Foundation asks our community to reach out to their friends and families to solicit donations. This year’s goal is $100,000 and we know that we can do it!

First identified in 2006, Koolen-de Vries Syndrome is a genetic syndrome that affects approximately 1 in 30,000 individuals across the globe. With only 16 years of diagnoses and research there is much more work to be done to better support the current Kool individuals as well as those who will be diagnosed in the future. The funds gathered today will impact the Kool community now while also providing a deeper pool of knowledge, awareness and treatments for generations to come.

I'm Ready to Fundraise for Research!

Fundraising for the Kool Kampaign can be done several ways. We have a GiveLively site for the event that will allow donors to donate on the main page or (preferable) on your site! Click the above link, set up your page (it only takes a few minutes!) and share your link with your community.

Every little bit helps! Often friends, family, co-workers and communities want to help our families and our children but may not know what they can do. This is a perfect opportunity for them to help the entire KdVS Community.

If donations are made through the website or by sending in checks, for example, your donors can put the name of your child on their donation. Offline donations (anything outside of GiveLively) can then be updated on your GiveLively account to reflect your totals.

Questions? Reach out to [email protected]!

2021-2022 KdVS Foundation funded and to-be-funded projects:

$100,000-KdVS Foundation Fellowship. Dr. Brooke Latour studied with Dr. Bert de Vries and Dr. Nael Kasri how mutations that lead to KdVS give rise to altered brain development through the use of KdVS brain organoids (“brains in a dish”).

$10,000-COMBINED Brain Rent-a-neuroscientist. The Foundation rented a neuroscientist to review all research into KdVS. After interviewing KdVS research, COMBINED Brain will create a research strategy for the Foundation. This will explain the gaps in research. Once the gaps are identified, the Foundation can work to fill those gaps and expand our knowledge of KdVS.

$55,000-CURE Epilepsy Grant. CURE Epilepsy and the KdVS Foundation have joined forces to create a rare epilepsy grant into KdVS for $100,000. Scientists may study the KAT8 Regulatory NSL Complex, use iPSC lines to screen new drugs, or build a natural history study to characterize KdVS seizures.

$40,000-Investigator Grant. The Foundation created its first Investigator Grant. This grant will encourage research into KdVS. This grant program is designed to facilitate investigations into KdVS and lay the groundwork for future grants from industry, government and nongovernmental sources, and private funds

$10,000-Biorepository. The KdVS Foundation has set aside $10,000 to jumpstart its newly created biorepository.  This biorepository will hold KdVS blood and tissue samples.  These samples will be shared with researchers investigating KdVS.

Not only are we using Kool Kampaign dollars to fund this important research, but we are encouraging our families to create a CRID (international research identification number), to join our new contact registry so we can be RESEARCH READY, to enroll in any of our ongoing research studies (FaceMatch, Speech Tracker, Dysautonomia, ESES/CSWS, and Ocular). We know that research will find a therapeutic, treatment or cure for our community.

As always, please reach out to us if we can be of assistance, [email protected].

Previous Kool Kampaigns - Coming Soon


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Kool Kampaign