U.S. Rep. Chris Smith was a guest speaker at the fourth annual JAR of Hope Gala to combat Duchenne’s Muscular Dystrophy, held at the IPlay America center on Schanck Road in Freehold Township this weekend.
Below are Excerpts of his remarks:
Let me thank Jim and Karen Raffone for their amazing love and effective advocacy for Jamesy—and their extraordinary leadership for all the boys and young men and their families struggling to overcome Duchenne.
Jim, Karen and their team are an inspiration.
Everyone here knows, they are a remarkable force for good.
They are rightfully impatient—time’s not on their side—and strive for breakthroughs now.
Jim has been aggressively raising awareness through iron-man athletics competition like the GtoG ultra, marathons and the push-up campaign.
And when a cure is finally achieved, it will be because of their courageous and bold leadership and tenacity.
Several months ago, I hosted Jim in Washington. We met with Tom Cole, Chairman of the congressional committee that funds the National Institutes of Health (NIH). After the meeting, Chairman Cole told me how impressed he was and that he, too, would work to increase Duchenne research funding.
I asked that we push the level from $34 million in 2018 to $44 million in 2019.
Last week, the NIH got a $2 billion increase over last year—for a total of $39 billion—for medical research of all kinds.
Now, with Jim’s help, we’re pushing NIH to earmark more lifesaving funds—at least another $10 million— to fighting Duchenne's.
We need to continue to work hard—and have hope.
The event took place Oct. 6. Smith has long been in the fight against Duchenne’s Muscular Dystrophy (DMD) with which their son Jamesy is diagnosed. DMD is a progressive muscle disorder that affects boys, causing a loss of both muscle function and independence. DMD affects approximately 1 out every 3,500 boys born worldwide, or about 20,000 each year. Nearly all boys with DMD die by their late teens or early 20s from respiratory and/or cardiac complications. DMD has a 100 percent fatality rate, and is typically diagnosed in boys between the ages of 3 and 7, who generally lose their ability to walk between the ages of 8 and 12. Sadly, there is no known way to stop the progression of DMD, and no cure.
