VCFSEF is saying "Good Bye"

It is with sadness that the VCFSEF's 22+ year era of sharing knowledge and hope is coming to a close. But as the quote below states, new experiences await us all. Thank you to all who have contributed to this worthy organization.


Founded in 1992 by Dr. Robert Shprintzen along with a small number of dedicated families and professionals, the "EF" has provided information, resources, and networking opportunities for hundreds of individuals, families, lay people and professionals, alike, for the past 23 years from all around the world (France, Spain, Italy, UK, Africa, Asia, Australia). We owe a debt of gratitude to our founding director,

Dr. Robert Shprintzen, (a.k.a "Dr. Bob") for his vision and tireless clinical, research and educational efforts. Even after his tenure as executive director came to an end, he served the Foundation in an advisory role helping the "EF" to maintain international connections, support state-of-the art research projects and provide social networking opportunities through our annual international scientific meetings. To this day he continues to share his expertise about the syndrome through the Virtual Center for VCFS. Dr. Shprintzen has figuratively, literally, and "virtually" touched so many of our lives. We cannot thank him enough for his ongoing commitment to individuals, families, and the professionals who are involved with those affected by the syndrome.

In 2004 the leadership torch was passed to Dr. Shprintzen's long time, respected colleague, Dr. Karen Golding-Kushner. During Dr. Golding-Kushner's tenure, the Foundation expanded its presence in the world holding international meetings in France, Italy, and Australia. Dr. Golding-Kushner's diligent oversight of the VCFSEF resulted in the creation of a website, regular newsletters, and informational brochures about VCFS translated into multiple languages. Dr. Golding-Kushner continues to provide guidance to families through the Virtual Center for VCFS.

In 2011, the proverbial torch was again passed to the very competent hands of Dianne Altuna who, as the third executive director, expanded the educational aspect of the foundation by providing webinars on relevant topics with cutting edge information for lay and professional people on a wide variety of topics. Under her leadership, funds were established to support the learning and social networking needs of young adults with the syndrome through regional meetings and social events.