JAR of Hope, a foundation that funds Duchenne muscular dystrophy (DMD) research, is working to get legislation approved to make September 10-16 Duchenne Muscular Dystrophy Awareness Week in New York state.
The foundation, along with New York City Assemblyman Michael Cusick, will ask New York Gov. Andrew M. Cuomo on June 13 in Albany, the state’s capital, to sign an official proclamation declaring DMD Awareness Week across the state.
That week will be devoted to highlighting the importance of identifying and communicating early warning signs of DMD, which is vital for early detection.
JAR of Hope was founded by James Raffone in 2013 after his young son, Jamesy, was diagnosed with DMD. Jamesy is now 8 years old. Today, JAR of Hope works to eliminate this life-threatening disease by increasing awareness and raising funds for research.
Raffone was recently asked 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) to mark the community’s support for the foundation.
“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,” Raffone said in a press release. “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 welcomes anyone willing to support DMD Awareness Week to come to Albany on June 13. For more information about the foundation, donations, events, or to know how to become a JAR of Hope ambassador, visit JAR of Hope’s official website.
In other news regarding New Yorkers, Andrea Dalzell, Miss Wheelchair New York 2015, will join other disability advocates at the United Spinal Association’s 6th Annual Roll on Capitol Hill June 11-14 to speak directly with legislators on issues affecting independence and quality of life for members of the spinal cord injury and disorders (SCI/D) community.
In Washington, D.C., Dalzell will urge her state’s representatives to provide New Yorkers in the SCI/D community better access to complex rehab technology (such as individually configured manual and power wheelchair systems) to be used by people with major disabilities like muscular dystrophy (MD), amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and others.
Dalzell wants to help other people maintain their independence and continue to participate in society. Complex rehab devices include sophisticated wheelchair seating and body components and specialty controls; however, current Medicare regulations make these systems difficult for wheelchair-dependent users to buy.
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