Research Archives - Koolen-de Vries Syndrome Foundation

9 Nov

Study Opportunity with the COMBINEDBrain Team

Calling all Kool Adults, Caregivers, Teachers and Healthcare providers! We’re asking for members of our community to meet with our friends over at Medical College of Wisconsin (MCW) who has […]

23 Feb

GenIDA Research Published

FREE Research Article Alert! GenIDA is an international patient registry for individuals diagnosed with intellectual disability, autism spectrum disorder, and/or epilepsy, which is based on an online questionnaire that is […]

13 Feb

2024 Research Opportunities Press Release

For Immediate Release February 13, 2024 Koolen-de Vries Syndrome Foundation Funds Five Research Opportunities for 2024 WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation is pleased to announce that […]

25 Jan

Introduction to the UCLA CHAMPION Study

In a new study, UCLA researchers are looking to learn about motor, cognitive, and behavioral developmental in children with Koolen-de Vries Syndrome that are 1-5 years of age. The study […]

22 Jan

Grant Awarded to Dr. Herault

Dr. Herault is a Professor at the Institut de génétique et de biologie moléculaire et cellulaire. Dr. Herault established the first mouse models of KdVS – creating a model for […]

20 Jan

Grant Awarded to Dr. Willsey

We are excited to announce the awarding of our 3rd of 5 Investigator Grants to Dr. Helen Willsey, PhD of the University of California, San Francisco! Her project is titled, […]

18 Jan

Grant Awarded to Dr. Wright

Dr. Wright is a post-doctoral researcher at the Murdoch Children’s Research Institute who will be investigating whether select small molecule compounds can correct molecular deficits in KdVS cell models. Many […]

17 Jan

Grant Awarded to Dr. Faundez

Dr. Victor Faundez, MD, PhD is a Professor at Emory University in the Department of Cell Biology. He has developed an expertise in discovering biomarkers of rare neurological diseases by […]

5 Jan

New Speech Publication

Publication alert! According to research involving speech and KdVS individuals, stuttering was described in 36/47 (76.6%) verbal KdVS participants and followed a unique trajectory of late onset and fluctuating presence. […]

26 Oct

Community Participation in Developing Treatments for KdVS

This video is the first in our newest series “Research Chat with KdVSF CSO.” Our Chief Scientific Officer, Dr. Anna Pfalzer delivers this month’s topic on “The Importance of Community […]