Published July 17, 2013
Presented June 19 in Washington, D.C., the award recognizes Robinson’s career-long dedication to studying and preventing fetal alcohol syndrome (FAS), a prenatal condition that leads to developmental disabilities as well as physical deformities.
His contributions as a physician, researcher and advocate for FAS patient support span the globe.
Robinson works with patients who have or may have been exposed prenatally to neurotoxic substances, such as alcohol.
At Women & Children’s Hospital of Buffalo, he directs dysmorphology and clinical genetics, a medical specialty addressing structural defects, especially congenital malformations.
Robinson’s research is funded primarily by the National Institute on Alcohol Abuse and Addiction.
He was an inaugural member of the institute’s multidisciplinary Collaborative Initiative on Fetal Alcohol Spectrum Disorders.
He also has worked with international collaborators to screen children for FAS and conduct longitudinal studies of children with the syndrome on three continents.
On the state level, he has worked with the New York State Department of Health’s Congenital Malformations Registry in an effort to track the prevalence of birth defects.
This nationally recognized physician-scientist, the son of blue-collar parents, persisted in his goal to become a doctor despite the doubts of others.
He once told a skeptical undergraduate professor, “I’m going to be a doctor and if I’m going to be a doctor, then I’m going to have to go to medical school.”
While a resident in pediatrics at the University of California, San Diego, Robinson developed a strong interest in birth defects and how a mother’s health affects the baby.
“I wanted to help provide better recognition of genetic and environmental disorders, especially in underrepresented populations,” Robinson says.
His turning point was a career-changing clinical rotation with Kenneth Lyons Jones, MD—the first physician to recognize FAS—who later mentored Robinson through a postdoctoral fellowship in dysmorphology.
Through his numerous contributions to the field, Robinson has helped children around the world who are often misunderstood and mislabeled.
Children with FAS “are often described as willful, impulsive and hard to manage,” he says. They are often “told they just have to work harder in school.”
Yet, they have experienced “an insult to the developing brain that leads to multiple problems,” he explains.
The syndrome causes a variety of birth defects, most notably an improper development of the nervous system, which leads to learning disabilities.
Physical symptoms include small stature, small eyes, smaller than normal head circumference and improper development of the space between the nose and upper lip.
FAS is entirely preventable, yet affects roughly 1 in 1,000 live births in the United States.
The rate is especially high in urban and rural poor populations, and more prevalent among minorities, Robinson says.
Although some believe wine or dark beer benefits pregnant women, “there is no safe level of alcohol consumption,” he says. “The recommendation is: Just don’t drink during pregnancy.”
Treatment focuses largely on school and behavioral support for the child, including physical, speech and occupational therapy, but also targets caregivers.
“Both the child and the mother are in need of intervention,” Robinson emphasizes.
Therefore, Robinson’s Division of Genetics at WCHOB works with an FAS parent support group.
“We try to depersonalize the syndrome and destigmatize the birth mother,” he says. “Sometimes, recognition of the child’s birth defect will get the parent to change her behavior.”
However, the vast majority of children with FAS are not cared for by their birth parents—nine out of 10 are in foster or adoptive care.
“That statistic just underscores the disruptive effect of alcohol on families,” he says.