Monmouth County Elementary Students from Clark Mills and Milford Brook Schools to Assemble the Chain for Duchenne Muscular Dystrophy Awareness
Manalapan, NJ (September 8, 2016) – JAR of Hope, a non-profit organization dedicated to raising funding for Duchenne Muscular Dystrophy (DMD) research, is proud to announce its inaugural Delivery of Hope Day taking place on Tuesday, September 13, from 8:30 am to 2:00 pm at Clark Mills Elementary School in Manalapan, NJ. The event marks the three-year anniversary of young Jamesy Raffone’s diagnosis of DMD, a debilitating disease that causes a mutation in the dystrophin gene, which controls muscle function.
For the event, JAR of Hope has partnered with corporate sponsor FedEx® to aid in the logistics of delivering and assembling the over 200,000 LEGO bricks, provided by Play-Well TEKnologies. Students from the Monmouth County School District will attempt to shatter two LEGO world records, for the longest LEGO chain ever assembled, and in the fastest time. Currently, the world record for the longest LEGO chain stands at over 902 meters. “FedEx fully believes in and supports the plight of JAR of Hope,” stated Christopher Avitabile, Linehaul Manager at FedEx Ground®.
“It’s always our top priority to form a connection between people and possibilities, and to assist this brave organization in its goal of connecting the community to such an important cause is an honor and a privilege for the entire FedEx family.”
Jim Raffone, CEO and Founder of JAR of Hope, spawned the idea, due to the daily activity of playing LEGOs with his son Jamesy. Mr. Raffone imagined a great way to combine education and fun for Jamesy’s peers.
“Jamesy Raffone attends our school, and everyone here knows the family, so this fight is personal for us,” remarked Jayme Orlando, Principal at Clark Mills School. “We’re committed to helping JAR of Hope, and our kids are excited about spreading the word and achieving a new record.” Jody Pepchinski, Principal at Milford Brook, shares the sentiment, adding “Our students and staff are very excited, not only about the LEGO chain, but also about community service. Hopefully, at our assembly, we’ll be able to announce a new world record set in Manalapan.”
The Children will learn about the dystrophin gene by creating a replica of the gene with the LEGOs, while enjoying taking part in one of Jamesy’s favorite pastimes. A special team of engineers from Play-Well TEKnologies developed and designed the special LEGO gene chain. Play-Well teaches structural engineering year-round to approximately 100,000 students through summer camps, classes, and parties. Each program is a uniquely fun experience. For the event, Play-Well will produce an instructional video for the school kids to view outlining the correct way to connect the LEGOs.
“Here at Play-Well we explore, solve problems, and express ourselves through LEGOs,” remarked Jeffrey Harry, VP of Marketing and Fun at Play-Well TEKnologies. “We’ve found that kids look forward to educational activities when they’re having fun doing them. When we spoke to Mr. Raffone and learned more about his son Jamesy’s story as well as the countless families affected by this little-known disease we were especially excited to get started.”
Prior to the event, high school students from the College of Staten Island will organize and assort the 200,000+ loose LEGOs in bags that will include each link of the gene chain. The bags will include instructions for assembly. At which point, FedEx will ship the assorted pieces to the Monmouth County School District’s Clark Mills and Milford Brook elementary schools where over 1,100 students from twenty classrooms will attempt to build 500 LEGO chain links during a 40-minute period. FedEx executives have volunteered to assist the schools on-site during this historic day, and will facilitate the delivery and construction of the massive LEGO chain.
“On September 13th of each year, JAR of Hope will do something noteworthy and positive to mark the day our family learned about DMD and my son’s diagnosis of this devastating disease,” remarked Jim Raffone. “The kids will be uniting and building the links of this LEGO gene chain, leading to a greater awareness and understanding of DMD as well as increased public concern and interest which will eventually result in more innovative approaches to treatment. Jamesy loves LEGOs and he will ultimately be connecting the final piece of the largest LEGO chain.”
JAR of Hope thanks its sponsors and ambassadors for making Delivery of Hope Day a reality, and a special thanks to the College of Staten Island High School students for breaking down the LEGO pieces into zip lock bags and expediting the process. Also, the organization thanks CSI principal Joseph Canale, and English teacher Rosario Miano, for their efforts in making this all possible.
For all information regarding JAR of Hope, or to become a JAR of Hope ambassador by way of donations or event participation, please visit the recently re-designed website www.jarofhope.org.