To all who support out fight, I’d like to share this amazing accomplishment with all in the community.
On September 13,2016, Mayor Maryann Musich of Manalapan Declared September 13th as Duchenne Awareness Day in the City of Manalapan. (bc this is the day Jamesy was diagnosised). She bestowed this honor to my family because she witnessed how the community came together to break 2 World Records and set 1 World record in 1 day, all in the name of education. Educating children about this dreaded disease. We joined 1 high with 500 students to 2 elementary schools with over 1100 students. Using the World Record event to break the longest lego chain ever created allowed us an opportunity to have over 2000 people learn of Duchenne in one RECORD SETTING DAY!
So after learning of this wonderful accomplishment, Congressman Ronald Dancer quickly jumped into action writing a proclamation to proclaim Duchenne Awareness Week in the State of New Jersey after He felt our boys deserved more.
During my conversation with the Congressmen, I explained how World Duchenne Awareness Day is on September 7th and if we could connect the two days somehow to include all of the boys affected, this would be great. Later that week, I received a call from his office stating he would do just that.
I hope all those who took part in creating World Duchenne Day see this as a positive and this is another sign of how JAR of Hope, my family and our supporters are trying to support all foundations and families in this Duchenne community.
Bringing people together is what we are all about. “Together, we will find a cure”!
I am so proud of this logo that Rebecca Farash Ginsberg designed for us and the people chose! This is another victory in the fight against Duchenne!
I will fly the World Duchenne Awareness balloon tomorrow ask ask if everyone can too, then change to the new logo for us the rest of this week.
(*if any parent out there would like to have a day proclaimed in their town for their child, I would be more than happy to help you make that happen. I plan on doing this in every town and state in this great country of ours!)