The good news is treatment for people with VCFS can be highly effective.
"Resolving the congenital heart disease doing surgical repairs, speech problems and to some extent treating mental illness and learning disabilities can really be syndrome-specific, meaning there are treatments you would do for VCFS that you would not do for other people," Shprintzen said. "Conversely, treatments that would work for other people, you wouldn't do to people with VCFS. Our success rate in getting good outcomes is terrific, which is why everybody comes here."
The VCFS International Center founded in 1997 by Shprintzen and collaborating colleagues from the Schneider Children's Medical Center of Israel, is the largest specialty center of its kind in the world. The center employs more than 30 different healthcare specialists who are devoted to the special needs of children and adults affected by VCFS.
His greatest hope for the future, however, is for the center to close someday.
"In other words, to be able to come up with treatments that are so effective, it's no longer necessary to pay this much attention to it," he said. "Obviously it's not going to happen tomorrow, but the issue is that practitioners everywhere will have such a good handle on what the appropriate treatments are that it's no longer necessary to maintain specialty clinics."
The center relies heavily on donations, particularly from patients and grants, and Shprintzen is also grateful to the fiscal generosity of Upstate Medical University's administration.
"You would feel terrible about diminishing a level of care for a group of patients when you knew that you had the special skills to do really great things with these patients," Shprintzen said. "Our concern, of course, is that should things happen to the healthcare system, that the first things to go are going to be the most expensive things. That's true of this center."