Through a variety of research programs and activities, the CdLS Foundation plays a major role in advancing clinical and basic scientific knowledge about the syndrome.
Since its inception, the Foundation has been at the forefront of CdLS research, connecting researchers with families, as well as funding research studies. All CdLS Foundation-sanctioned research activities are approved by the Research Committee, a team of doctors, researchers and parents that ensures that patient confidentiality and trust are protected, and researchers operate with patients’ best interests in mind.
In recent years, the Foundation has collaborated with researchers studying such topics as sleep, behavior, blood clotting, dental anesthesia, animal models, and parental stress. In 2008, the Foundation supported its first post-doctoral research fellow. Jinglan Liu, Ph.D., examined how changes in the genes that cause CdLS affect other genes that control characteristics such as missing fingers, cleft palate and developmental disabilities. Her CdLS research continues today.
What lies ahead? Earlier interventions. Better treatments. And yes, maybe someday, even a cure. But until then, the Foundation remains a source of support and information for families and a willing collaborator for researchers and professionals.
If you are interested in undertaking CdLS research, questions should be addressed to the Research Committee.
If you are a medical professional and would like to learn more about CdLS, please view our page for professionals.