Ultra running is pushing the evolve of what we thought we knew about the human body. Running hundreds of kilometres completely breaks the measuring stick of what the average person believes to be possible.
Yet, these average, everyday, people are toeing in at the starting line of one of the world’s toughest ultra races. The Grand to Grand Ultra (G2G), a 273 km stage race in the high desert of Utah. Here’s why.
Yeah it’s the toughest thing any of us have ever done. However, It doesn’t hold a light to how tough every single day is for a child living with Duchenne Muscular Dystrophy (DMD). That’s why we do it. That’s why we run.Rick Buro – 2x G2G Finisher
How Tough Exactly is DMD
Buro is a second time runner at the G2G. Buro is the owner of a cross-fit gym in New Jersey where he pushes his clients to move as much weight as they can and quickly as they can. His entire life is the antithesis of DMD.
DMD is a muscle wasting disease with no cure. The symptoms often start showing up at around age 2. Children developing with DMD can’t play sports with their class mates, and can’t participate in almost anything physical.
Before long, a child with DMD will be bound to a wheelchair for the remainder of their shortened lives. It’s a devastating disease with very little support from the medical industry, government, or science and research groups.
Why? Because it’s an orphan disease. Not enough children are effected for the disease to be profitable the way cancer or heart disease is. Everyone know’s someone effected by cancer, but how many people have even heard of DMD?
Passion Meets Purpose
That’s our goal with these races. If somebody hasn’t even heard of the disease, how can we expect them to reach into their pockets and write a check so we can fund research for it.Jim Raffone – Founder of JAR of Hope
Jim’s son was diagnosed with DMD. The doctors told Jim and his wife Karen to go home and love their son, “there’s nothing to be done”. That was either the right thing, or the wrong thing to tell the Raffone’s. Jim and Karen took it upon themselves to create JAR of Hope, a pillar in the DMD community with one mission, cure an “incurable” disease.
Building teams that can represent JAR of Hope and continue to spread the word of DMD is extremely effective. Jim recently ran the Alps 2 Ocean ultra in New Zealand. Upon arrival, he was shocked at how many people had heard of DMD from the ultra running community as a result of JAR of Hope’s presence internationally.
The Grand to Grand Ultra has been a bucket-list race for me for years. Being here with Jim and JAR of Hope gives me a boost of confidence. Now that I’m here, there’s no way that I’ll quit.Nancy Cofrancesco
The ultra community is extremely international. Participants are often globe trotters, traveling around the world in search of the next great ultra race. DMD slowly working into the fabric of the community at large.
JAR of Hope gives participants a purpose for their passion. If someone is a passionate runner, teaming up with JAR of Hope enables the runner to do some good along the way. If you’re going to run, you might as well run for something bigger than yourself.
Why Raising Awareness for DMD Through Ultra Running is Effective
You look at ultra marathoners right, they move their bodies over the longest distances they can. They reflect on what they’re doing and kids with Duchenne will never be able to do that… There’s just something strong that can’t be explained. There’s this feeling of I can, for those who cannot.Rick Buro
This isn’t the first time organizations have effectively used racing events as effective tools for raising funds and awareness for diseases. Diseases like cancer and CIBC Run for the Cure. Red Bull’s Wings for Life raising money for spinal cord injury research.
These races are all about community. The friends you meet here become family. That’s what it’s all about. Getting to reunite with JAR of Hope every year at this race gives us the ability to brainstorm effective ways to fundraise and continue spreading the word.Leanne Richardson – 3x G2G finisher
Ultra running events are an intimate approach to achieving the same goal. The goal for JAR of Hope is to make ultra running become synonyms with DMD, to help make DMD known around the world. Ultimately, funding research for a cure to DMD will save Jim and Karen’s son’s life, and the lives of thousands of other boys.
JAR of Hope is releasing a mini-short of their Grand to Grand Ultra experience. Watch the series online.
To learn more about DMD visit jarofhope.org
All media shot by Life Outside Studio.