SOURCE: JAR of Hope

JAR of Hope

May 22, 2017 14:00 ET

JAR of Hope Attempts to Pass Legislation that Would Make Early September Duchenne Muscular Dystrophy Awareness Week in the State of New York

Foundation Dedicated to Curing Duchenne Muscular Dystrophy Aims to Request that New York Governor Proclaim September 10-16 as a Week Dedicated to Duchenne Awareness and Education

WEST LONG BRANCH, NJ--(Marketwired - May 22, 2017) - On June 13, JAR of Hope, one of the world's foremost foundations dedicated to funding research for Duchenne Muscular Dystrophy, will attempt to pass legislation that would make September 10-16 Duchenne Muscular Dystrophy Awareness Week in the state of New York.

Duchenne Muscular Dystrophy is the most common terminal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 live male births with 20,000 new cases each year worldwide. Duchenne is a muscle wasting disease caused by a mutation in the gene that encodes dystrophin. In the absence of dystrophin, the muscle cells are easily damaged resulting in progressive loss of strength and motor function. The disease leads to serious medical problems, particularly issues related to the heart and lungs. Although some medical treatments slow Duchenne's progression, there is currently no cure and patients typically only live until their late twenties.

JAR of Hope, in conjunction with New York City Assemblyman Michael Cusick, will request New York Governor Andrew M. Cuomo to declare September 10-16 Duchenne Muscular Dystrophy Awareness Week across the state. The awareness week will highlight the importance of identifying and communicating early warning signs of Duchenne, which is vital for early detection.

Jim Raffone, President and Founder of JAR of Hope, was recently on hand to assist the College of Staten Island High School in breaking a world record for the number of people completing push-ups as a group (495). Raffone strives to expand awareness of JAR of Hope's plight in order to cure this fatal disease that his eight-year-old son, Jamesy, was diagnosed with four years ago. "Although I'm grateful for the effort of my hometown, Staten Island, getting behind our campaign, it's important that our initiative spreads beyond New York City and New Jersey to raise awareness for every child regardless of geographic location. Duchenne Muscular Dystrophy affects children of all genders, races, and backgrounds throughout the world. We will not stop until Duchenne Muscular Dystrophy is a household name and we have cured at least one child."

JAR of Hope encourages anybody willing to support Duchenne Muscular Dystrophy Awareness Week to come out to Albany on June 13.

For all additional information regarding JAR of Hope, or to become a JAR of Hope ambassador by way of donations or event participation, please visit www.jarofhope.org.

About JAR of Hope:

JAR of Hope was founded in 2013 by James Raffone, after his young son, Jamesy, was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a form of muscular dystrophy that is caused by a mutation in the dystrophin gene. The absence of dystrophin results in muscle deterioration -- leading to paralysis, decreased cardiac function, and eventual death. Duchenne affects about 300,000 young males worldwide with approximately 20,000 cases in the United States. Currently, Duchenne has no cure and the average life expectancy of those affected is 25 years. However, JAR of Hope is devoted to eliminating the disease by bringing awareness and raising funds directed to ongoing research.

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