Stony Brook Pediatric MS Center Celebrates 10 Years with a Patient ReunionThe event provided an opportunity for the first patient to bond with newer ones
In 2002, the National Pediatric MS Center at Stony Brook was formed to address the unmet medical needs of children with MS. The Center was the first of its kind in the nation. This year Stony Brook University received a $2.5 million gift from Robert and Lisa Lourie to advance research and clinical care at the Center, which was subsequently renamed in their honor. Historically viewed as an adult-onset disease and difficult to diagnose in children, MS affects approximately eight-to-ten thousand children in the U.S.
“These children and young adults who we have treated for years should be proud of how they have handled the challenges of their disease,” said Dr. Krupp. “We were thrilled to celebrate with them and mark the 10-year anniversary of the Center.”
Dr. Krupp said that because MS is characterized by relapsing and remitting symptoms with unpredictable timing, children are particularly affected by the disease course, not only physically, but also emotionally. For these reasons, Dr. Krupp explained, patient and family access to pediatric MS specialists and other professionals at a multidisciplinary center is critical for integrating care of the multiple facets of the disease and addressing the well-being of the patients and their families. Comprehensive care that emphasizes the continuity of services is also essential for the long-term management of the disease.
The reunion provided an opportunity for increased connectivity and social support for members of the young MS community. The celebration also provided a chance to share their experiences with each other and the doctors, nurses, and staff of the Lourie Center.
Maisha Leonard, 27, from Setauket, a long-time patient of Dr. Krupp and the first patient treated at the Center, attended the reunion. Maisha’s diagnosis fueled Dr. Krupp’s inspiration to develop a pediatric MS center at Stony Brook. Approximately 15 other patients and their families took part in the celebration.
Many of the patients already knew each other from the Teen Adventure Program (TAP) that is run by the Lourie Center each summer. In its eight year, the TAP is a unique program designed to teach young MS patients about their disease and ways to live a healthy life. The camp offers tools to build a positive self-image while developing confidence and life-long friendships.
About the Lourie Center for Pediatric Multiple Sclerosis