While at Harvard in 1998, David Weinstein was being dissuaded from working on a rare genetic disease that he would later dedicate his life to.
Weinstein is now a recipient of an award previously presented to Pope John Paul II and Nelson Mandela — the Order of the Smile award.
Recipients are nominated by children for their efforts in helping children. Hundreds of patients suffering from glycogen storage disease nominated Weinstein.
“The fact that the patients put so much effort into getting me recognized is truly invaluable,” he said.
The disease is a rare condition in which the body cannot properly store sugar.
“This is really not about me,” Weinstein said. “It’s really about an effort to help a community that has been in need of help, and even today, many children in this country are dying.”
At UF, Weinstein directs the largest research program in the world for the disease.
“We take care of people from all 50 states — and 36 countries,” he said.
More than 425 patients from around the world have come to Gainesville for care.
“When I moved here to Gainesville in 2005, I wanted to create the Disney World of health care,” he said. “I wanted to create a place where people could get care, and where if people didn’t have any money, they wouldn’t have to worry about that.”
Weinstein first came to Gainesville to pursue his dream of gene therapy. He wanted to cure dogs in order to bring gene therapy to humans.
UF’s veterinary school would allow Weinstein to accomplish this.
“There are dogs that naturally have this disease,” he said.
The disease has several different forms and can lead to seizures, brain damage and death.
Cornstarch therapy has been used to treat the disease in children.
However, each treatment has to be individualized for each child.
“Most children with GSD have to drink cornstarch,” he said. “They weigh it out like a medication and use it to meet the energy needs of those who have excessive amounts of sugar in the liver.”
UF Glycogen Storage Disease Nurse Specialist Iris Ferrecchia had four children, three of whom suffered from the disease. The eldest child of the four passed away as a toddler.
Ferrecchia said she first met Weinstein when her youngest child was a patient in the program in Boston.
“No one else has cared,” she said. “There are so many orphan diseases in the world. It’s nice that we have a champion.”
Not only is Weinstein working to help cure the disease, but he has also created a charity for his patients.
The charity covers the costs for patients to travel to Gainesville for treatment.
A critically ill child, Weinstein said, traveled to Gainesville after being brought in by the U.S. Army in Afghanistan.
“We have brought in people from every continent except for Antarctica using the charity,” he said.
Weinstein also travels to countries to provide aid and training. He travels to Europe at least once a month.
“When I travel and I go back to these countries, and I see children doing well, it’s so rewarding,” he said.
Last year, Weinstein created a clinic in Brazil. This month, people will be arriving from Brazil, Germany and the Netherlands for training, Weinstein said.
He will travel to Poland in August to attend a knighting ceremony, where he will receive his Order of the Smile award. Some of his patients will be there to watch.
Even with all the traveling, Weinstein does not like to stay away from Gainesville for too long.
“There are so few doctors that we have a waiting list of over 18 months to get in here,” he said. “I try to never miss a workday.”
Scott Rivkees, the chairman of the UF Department of Pediatrics, said Weinstein is inspirational.
“Dr. Weinstein is an exceptional physician, and even more exceptional than his clinical skills is his dedication to his patients,” Rivkees said.
Through internet communication, Weinstein helps manage the disease of patients outside of Gainesville.
One of Weinstein’s patients used social media to encourage Weinstein’s other patients to write letters nominating him for the award.
She collected the letters and composed them into a book for him.
“The person who had collected the letters was so excited about this that she couldn’t keep it a secret,” he said. “That’s how I learned about the nomination. All of a sudden I was getting calls, one day, from patients in Europe saying you won an award.”
Weinstein said he received letters written by 2- and 3-year-olds with the help of their parents.
“Every single letter was moving,” he said.
Dr. David A. Weinstein stands outside the Reitz Union on Saturday afternoon. Weinstein is a recent recipient of the Order of the Smile award.
