Written by Zachary Hanby
The Osler Society of the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and the Rare Disease United Foundation (RDUF) came together to present Beyond the Diagnosis: Art Exhibit and Rare Disease Program—an event that raises awareness about rare diseases by showcasing the beauty of the children afflicted by them through portraits painted by artists from around the world who have donated their time and talents to the cause.
The exhibit travels to hospitals, medical schools, art galleries and research organizations worldwide with the goal of bringing much-needed awareness to a multitude of rare diseases. Accompanying each portrait is biographical information about the child, the disease and the artist. “The artists have chosen to portray the children in such a positive way,” said Shruti Koti, a first-year medical student at Zucker School of Medicine. “It shows that even though they have this condition, it doesn’t get in the way of them being children.”
The Beyond the Diagnosis Exhibit, on display during the month of November 2017 in the gallery at the Zucker School of Medicine, is being accompanied by two evening programs inspired by the portraits. The first program, held on Tuesday, November 14 at the School of Medicine, centered on the challenges and treatments in the management of Prader-Willi Syndrome and Angelman Syndrome, genetic diseases which result from abnormalities of chromosome 15. The event featured a panel of patients and families coping with these disorders led by Martin Bialer, MD, PhD, an expert in medical genetics at Northwell and an associate professor of pediatrics at the Zucker School of Medicine.
“I’ve been at the health system since ’89—in that time we’ve come very far with Prader-Willi and Angelman Syndrome,” said Dr. Bialer. “Events like this help raise awareness to such rare cases.” Maria Picone, mother of a 5-year-old daughter with Prader-Willi Syndrome, stated, “What we learned is that there’s a big gap in what’s happening in rare disease and what’s available in literature, so we’re trying to empower patients, families, and caregivers to collect the stories of these children.”
On Wednesday, November 29, 5-7 p.m., the second program will be held at the Feinstein Institute for Medical Research, where a number of the portraits are currently on display. This program will focus lysosomal storage order diseases, including Gaucher Disease and Morquio Syndrome Type A. The program will include genetic research poster presentations from students of the Elmezzi Graduate School of Molecular Medicine, as well as a panel discussion moderated by Dr. Bialer and Sharon Chen, MS, CGC, a genetic counselor, both of Northwell Health’s Lysosomal Storage Disease Center. All are welcome to attend.
For more information about the Beyond the Diagnosis art exhibit and other Osler Society programs at the Zucker School of Medicine, please email SOMOsler@hofstra.edu or visit www.medicine.hofstra.edu/about/osler.