awareness of a rare
JAR of Hope’s mission is dedicated to bringing awareness and raising funds directed to ongoing research in the hope of eliminating Duchenne muscular dystrophy. Considered an orphan disease, Duchenne muscular dystrophy (DMD) is a rare neuromuscular disease that affects about 300,000 boys worldwide, with approximately 20,000 cases in the United States.
Orphan diseases are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. And that’s just what we’ve done—and continue to do—for this local nonprofit, helping JAR of Hope evolve into an organization with a national presence that’s putting Duchenne muscular dystrophy in the spotlight for a cure.
September 13th is a significant date for Jim and Karen Raffone—the founders of JAR of Hope—as that was the day in 2013 that their son Jamesy was diagnosed with Duchenne muscular dystrophy.
To generate awareness of Duchenne muscular dystrophy and the quest for a cure, a plan was made for the record books—literally. The idea was to build a chain of LEGOs on September 13, 2016 that would break the previous world record of 902 meters (2,959 feet—more than ½ a mile long). The LEGO chain created would serve to symbolize the DNA strand for the gene mutation that causes Duchenne.
1,100 students, teachers, parents, and volunteers were recruited to help connect over 200,000 LEGO pieces into a tremendous chain spanning 947 meters (3,107 feet) in 10 hours, breaking the previous world record by 147 feet, and breaking not only one LEGO World Record, but two. Turns out a second record was smashed as well—connecting the first 10,000 LEGOs in just three hours, setting a new mark for speed of assembly, previously standing at eight hours.
Although not world records in and of themselves, this one event generated (and continues to generate) a tremendous amount of visibility and awareness for JAR of Hope and Duchenne muscular dystrophy: