Charleston Southern student takes on Parkinson's

CHARLESTON, SC – February 15, 2012 – In early May, James Mangini will leave North Charleston, South Carolina, and begin running eight and 10 hours a day. Not on smooth cement sidewalks and highways, but on gravel, dirt, grass, and on byways, secondary roads, through small towns, large cities, across nine states, 1,000 miles in 30 days, until he reaches his destination: New York City.Take a moment; let that sink in.

This essentially boils down to this basic mathematic formula: 1,000 miles divided by 30 days equals, roughly, 33 miles per day. For the record, a marathon is 26.2 miles. What Mangini is attempting is 38 marathons in 30 days.

Simple math – with a calculator; interesting – if you are reading this over lunch; inspiring – on paper; easier said, calculated and plotted, than done.

Mangini, a full-time student in Charleston Southern University’s College of Adult and Professional Studies and a member of the Board of Visitors, is the Chief Executive Officer of SweetAngelGifts.com, a philanthropic online gift company whose mission is to partner with charities to cure and/or control disease and make a significant impact on society.

Not long after SweetAngelGifts.com launched last fall, the company partnered with the Michael J. Fox Foundation for Parkinson’s disease research. Instead of simply adding The Michael J. Fox Foundation to his list of partners,
Mangini invested time in researching Parkinson’s, its fundraising efforts and the overwhelming effects the disease has on human life.

The Parkinson’s Disease Foundation reports more than five million people worldwide have been diagnosed with Parkinson’s Disease (60,000 are diagnosed every year); another two million are estimated to be living with the disease – but have yet to be diagnosed. An estimated seven to 10 million people
worldwide are living with Parkinson’s disease.

The disease not only cripples people physically, but financially as well.

The PDF states, combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $25 billion per year in the United States alone.

The numbers were staggering as Mangini sat in his office pulling research off the Internet. It shocked me, he said. I didn’t realize it affected so many people, and right now there is no cure. I just sat back in my chair and absorbed that.

Mangini felt challenged. As his mind began thinking how and where he and his company could attack this problem, the gears started turning, he remembers. Marathons seem to be very effective. I am in Charleston, South Carolina. The Michael J. Fox Foundation is headquartered in New York City, what if I was to run from here to there?

His first call was to Katy Reitz, director of advancement for the Michael J. Fox Foundation. When he casually threw the idea out the phone went silent, a pause that seemed to last forever.

This is fantastic, Reitz finally replied. I think this is heroic.

I figured she was thinking, this is either heroic or I am nuts – probably a little more nuts, Mangini said laughing. Team Fox is just an amazing organization of passionate people who are helping with communication and national media.

Mangini began plotting his course on a map, figuring out ways to connect with the community along the way. The 1,000 Mile Marathon: Search for America’s Heroes will include stops in 13 major markets along the route to host fundraising events. The financial goal is $500,000, made possible by The Brin-Wojickick challenge; Dollar-for-dollar fundraising match by Sergey
Brin, a co-founder of Google, the search-engine company, and his wife, Anne Wojcicki, a co-founder of 23andMe, a genetic-testing company.

April is Parkinson’s Awareness Month. Mangini plans to spend his spring, educating, training and promoting 1,000 Mile Marathon: Search for America’s Heroes. Since going public with his plan, people in Charleston, customers and business partners across the country have begun to rally in support of
the event.

Oh, one small detail: James Mangini doesn’t enjoy running – or even walking.

At age 32, he has never run a marathon. He’s never run a half-marathon. The longest distance he’s ever run was five or six miles when he was in the military. He was 19 years old.I’m a strength athlete, he said. I enjoy working out with weights and just a little bit of cardiovascular workouts to keep your heart healthy, so this will be interesting.
Mangini began planning his physical workout schedule with a call to Sam Fox [no relation to Michael J. Fox], who ran 2,650 miles in 61 days in support of Parkinson’s. Fox’s advice to Mangini was simple: practice like you’re going to play.

My goal and plan will be to mimic what I am going to be doing on the road, which is to jog a couple miles, walk a couple, jog a couple; the problem is the body – remember, this is the equivalent of one-and-one-half marathons a day – is not going to have time to recover, said Mangini.

Mangini is expected to consume 8,900 calories a day. The terrain will be rugged; the journey dangerous. Mangini will have a support team trailing in a vehicle every step of the 1,000 Mile Marathon. But he must overcome more than physical endurance. This journey will require intense focus and mental preparation.

You’re pushing yourself to a physical and emotional limit every day, Fox said in an interview with the San Francisco Chronicle. You don’t have time to recover. Not getting enough rest. Not getting enough food; trying to catch up because you’ve fallen behind. All those things factor in. The emotional part is going to be the biggest challenge for me, especially on the road.

If I am on the road 8-10 hours a day, what do I do? Where is my mind at? said Mangini. There are some things we are going to do from a marketing perspective using technology to connect. But, I think, being mentally prepared, being mentally there during the trip and at the speaking engagements will be the toughest part.

Daunting, certainly, but for Mangini this journey is a matter of the heart.

Three years ago Parkinson’s was another disease on a long list of debilitating illnesses. Then Mangini’s father was diagnosed with Parkinson’s, and suddenly the disease had a face.

When my father was first diagnosed with Parkinson’s it really didn’t sink in, he said. I didn’t see any of the symptoms, you know, the tremors and loss of body functions.

When Mangini went home last summer the tremors were only noticeable in his father’s pinky finger. Then, last Christmas, James and Daniela traveled to New Jersey to spend time with his family. As they pulled up to the curb, James’ father came out of the house to greet them.

From the time I saw him last summer, the disease has progressed quite a bit, said Mangini. His body movements, his facial expressions, there’s a lot of loss of control of movement and tremors.

Daniela held back tears. It was in that moment James knew his father was physically in a fight with a powerful disease. When we got out of the car to speak to him, we realized Parkinson’s also affected his ability to communicate.

That was tough, he said. In six months [since the last time he saw his father], it’s night and day. I’m still trying to put that together. I can’t even imagine what he’s going through.

Mangini’s father is a Little League umpire in New Jersey. He has always been active. The disease has not affected James’ father from calling games, but it has affected his movement.

The stages I’ve gone through, in terms of passion and level of energy for this project, obviously starts with my father, then the realization after seeing my father, it becomes personal.

The second to the last stop on the 1,000 Mile Marathon: Search for America’s Heroes will be Hillsbo
rough, New Jersey, Mangini’s hometown. He will have the opportunity to stop and see his father on the final leg of the journey.

I can’t even imagine what that is going to be like, he said. It will be really fun and emotional, but I hope we can raise awareness and honor myfather.

Mangini is driven by his father’s condition, but his relationship to
Parkinson’s disease runs deeper. His father’s grandfather was diagnosed in the 1960s with the disease and lived the last 20 years of his life fighting the condition. Family members on his father’s side of the family are living with Parkinson’s. Through his partnership with the Michael J. Fox Foundation, he’s met and built friendships with people with Parkinson’s.

Some of his customers have Parkinson’s.

When I first spoke to my father about this he was speechless, said Mangini, who told his father at Christmas. He was so proud and honored. I think he’s still trying to digest everything we’re doing. The whole family has been extremely supportive.

Pride. Honor. Courage. There are no numbers, no math, no words to define that. For more information on the 1,000 Mile Marathon: Search for America’s Heroes, visit 1000milemarathon.org.

http://www.pdf.org/en/parkinson_statistics
http://www.michaeljfox.org/
http://www.sweetangelgifts.com
http://www.1000milemarathon.org