Designate Sept 7th-Sept 13th “Duchenne Muscular Dystrophy Awareness Week” in New Jersey.
0 have signed. Let’s get to 2,500!
Duchenne Muscular Dystrophy was discovered 187 years to date and there still is not a cure or any therapy that can slow this disease down.
We are trying raise awareness about this disease to help support all those who are suffering from this unknown dehumanizing disease.
1 in 3500 hundred children a year are born with Duchenne annually. Parents fall in love with their children as soon as they are born. They fall in love with their child and prepare for their future by raising their child as healthy and normal.
It's not until the tender age of 4-6 do parents then have their worlds chattered by learning, not only, their son or daughter has an unknown disease that has no cure, but no child ever has survived their fight.
Parents learn their child with become a quadriplegic by age 15. Parents will learn by 17, in order to keep their children alive parents must make a decision to put their children on a breathing device until their heart fails while they're in their late teens or early 20's.
My son James Anthony Raffone was diagnosised in 2013 at the age of 4. He is currently 7 and has less then 3 years left before he is bound to a wheel chair. Before he was diagnosed with this disease I never know this disease existed. After 3 years of fighting, I've learned that this disease is virtually unknown.
With this petition signed it will help make Duchenne known and serve as a vehicle to help raise very needed funds to find a cure. 187 years is long enough. Too many families have endured loosing their children.
If we can get this week permanently designated it will be a huge step in the right direction for the next generation of those who will get diagnosised with Duchenne Muscular Dystrophy and also show those who are fighting today that there are people out there fighting for them.
By signing this petition your voice can be heard and help save a life.
"Together, we can find a cure"!
Today: James is counting on you
James Raffone needs your help with “Assemblyman : Designate Sept 7th-Sept 13th “Duchenne Muscular Dystrophy Awareness Week” in New Jersey.”. Join James and 1,634 supporters today.