Duchenne Muscular Dystrophy (DMD) is a rare muscular degenerative disease that affects 16 out of every 100,000 children per year. It is characterized by muscle and skeletal weakness that worsens over time and mostly happens to boys.
Sadly, there is no cure for DMD, however, there are treatments to help with symptoms of the disease such as heart and lung issues and the need for a wheelchair. Most young boys diagnosed with DMD have a life expectancy of around 27 years.
The founder of JAR of Hope, James Raffone, has a son, James Anthony, who has DMD, and he created this organization to raise awareness and garner donations so that one day they may find a cure. So far, Raffone has completed such events as doing thousands of pushups and running thousands of miles to raise money, but the times are changing.
It is getting harder and harder to get people to contribute – they needed something big.
That is why this dad is taking it one truly big step further to bring DMD into the minds of people and hopefully and ultimately their wallets by climbing Mt. Everest. He will head to Kathmandu with teammates Matthew Scarfo and Dillon Doeden at the end of April.
They will get together with other families who have sons with Duchenne Muscular Dystrophy. In Kathmandu alone, DMD has taken the lives of 70 children over the past 15 years, and these families are eager to share whatever resources they have along with information on and therapy for DMD. After the meeting of families, the tough journey will begin.
Raffone, Doeden, and Scarfo will then commence a 12-day trip that will take them from their base camp on Mt. Everest to an elevation of 17,598 feet. The goal is to raise $750,000 that will go towards investigating a new drug for the treatment of DMD. A clinical trial at the University of Florida is being funded by patients in which the money raised will go towards the $1.5 million that is required to conduct the 12-patient clinical trial.
The JAR of Hope founder chose Mt. Everest for 2 reasons. One, they needed something big to raise a large amount of money, and two, they want to honor the children who could never hope to climb the mighty mountain.
To date, Raffone and his organization have raied close to $9 million that has gone to help families and for research.
#duchennemusculardystrophy
#mteverest
WHAT TO TAKE AWAY FROM THIS ARTICLE:
- The founder of JAR of Hope, James Raffone, has a son, James Anthony, who has DMD, and he created this organization to raise awareness and garner donations so that one day they may find a cure.
- One, they needed something big to raise a large amount of money, and two, they want to honor the children who could never hope to climb the mighty mountain.
- Sadly, there is no cure for DMD, however, there are treatments to help with symptoms of the disease such as heart and lung issues and the need for a wheelchair.
