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.
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