Day 51: Darius Goes West

I left St. Petersberg heading north.  I found a bike shop In Gainesville, FL that I indended on going to for an oil change.  Gavin’s girlfriend Kristy and sister Nikki also lived there; I wasn’t sure if I was going to spend much time there, but I figured having the possibility of somebody joining me for lunch made it a logical stop.

I ended up getting my rear brakes changed and my K&N air filter cleaned too, so I didn’t get back on the road until about 4pm.  Both of them got off at 5pm, and I decided it would be a shame not to visit over two thousand miles from home.  Plus I needed to do laundry bad, upload some PokerVT videos, and was offered a free place to crash.

When I got there they asked what I wanted to do, I was indifferent, and they mentioned this documentary that Nikki needed to go to for class.  Sure, sounds good, and I went there with zero expectations.

What I ended up watching was a documentary called Darius Goes West, about a teenage boy with Duchenne Muscular Dystrophy.  It is the leading genetic killer of boys in the world, striking about 1 in 3500 boys worldwide.  It is 100% fatal, and to this date, there is no cure.  It affects all the muscles in the boy’s body, aging them at a significantly more rapid rate, including the heart, until they eventually die usually in their late teens or early twenties.

Darius’ older brother Mario also had DMD, and died when he was 19.  Both were regulars at Camp Promise and got to know many of the young counselors well in their time there.  Before Mario died, he asked one of them to “look after Darius.”

Jerry Lewis was the voice for DMD in my parent’s generation.  Kids of this generation don’t have a clue who he is.  Darius himself, a very talented and charismatic boy, after losing his brother, decided that he wanted to do something to help his brothers, those coming after him.  He knows that he is not going to live long enough to see a cure.  He decided that he wanted to get on MTV’s Pimp My Ride and have them pimp his wheelchair, using the show as a vehicle to reach a generation and make them aware of what DMD is and that we can cure it.

So, in what must have been an incredible back story, 11 boys from this camp, all college aged kids, got together to take Darius west.  They rented an RV and followed with a minivan.  They filmed the entire three week journey, making the movie Darius Goes West.  it was incredible.  I laughed, I cried, I learned, and I was moved.

After finishing the film, with MTV denying their request and idea due to fears of liability concerning modifying a wheelchair, they launched on a year long nationwide tour, going to high schools and universities showing the film.  It’s won over 25 awards, with at least 20 “best documentary” and “audience choice” awards at film festivals around the country.  The back of the DVD, which I proudly purchased, reads as this:

“in this multi-award-winning documentary, fifteen-year-old Darius Weemes, and eleven of his best friends, set off across America with the ultimate goal of getting his wheelchair customized on MTV’s Pimp My Ride.  The result is a rarely seen testament to the explosive idealism of today’s youth, as well as a vivid portrayal of adventure, of brotherhood, and of the character and strength it takes to shed light on an uncertain future.

“Not only does Darius Weems bravely face his own inevitible fate with Duchenne Muscular Dystrophy (DMD), but through his unflinching humor and his extraordinary laugh, he sparks a revolution in the lives of everyone who crosses – and then shares – his courageous path.

“Part revolution, part revelation, this film proves to people of all ages how life, even when imperfect, is always worth the ride.”

These kids in the last year have raised over $2m for Charley’s Fund, a non-profit foundation directing money directly into research that they feel has the best chance of finding a cure.  It’s headed by Charley’s dad, father of Charley who has DMD, and doctor/expert in DMD.  Since it’s inception a couple of years ago, they gave money to a tiny firm in Gainesville that has developed a pill that while not a cure is looking like it will significantly increase the length and quality of life for these boys.  Charley himself has been receiving some of the early treatements, has shown significant improvements, and it has shown enough success that a major firm has invested a very large number into advancing research on this pill.

All because a kid had a vision, and some crazy college kids decided to pursue it.

I want to help, and I want you to also.

First, check out DariusGoesWest.com.  There you can watch the entire movie for free, and I strongly recommend that you do that, then “Play it Forward” to other people know.  The vision of this movement is to create awareness in a generation that is hoped to cure DMD, and the current state of research is “like a train headed forward at full speed.”  We’ve figured out the exact spot where the mutation in the chromosome happens, the first domino that falls, and now all we have to do is stop it.

Second, consider donating to research.  I’ve already donated some $ to CharleysFund.org and I hope you do too.  You can text the word “SPIN” to 90999 to donate $5 to ParentProjectMD that will be charged directly to your cell phone bill.  Do it now.

I surely can’t do the research myself, so the best I can do is help advance research and awareness.  I’m going to do this the best that I can.  The evening was the highlight of my trip, fifty-one days in.

Peace and good luck,

Devo

3 Responses to “Day 51: Darius Goes West”

  1. Devo,
    I live in Gainesville and was a part of the committee that organized this event. I also have a son with Duchenne. It is through the efforts of people like Darius and yourself that we can make a difference for the next generation of DMD boys. Dale is 7. We are in a race to save him and the 20,000 boys that are diagnosed every year. Thank you for befriending our cause and for helping to spread the word.
    Sincerely,
    Lelia Ginder

  2. Devo- One of my best friends James has a son with DMD. We’ve gone on vacation with their family multiple times and he is still doing well but life is so tough for them knowing the road he is going down. It’s a tough life really preparing for the future for their son. There is a weekend coming up on September 26 where major college football head coaches will all be wearing arm bands and talking about DMD on the air to raise awareness and money.

    See you soon.

    Rood

  3. awesome Devo! Thanks for the post. Keep me posted on what ends up happening on your end and in Vegas. Some of the volunteers from that night and professors/research developers are interested in helping if it becomes more concrete.

    Goslabi!

    Great to see you!
    Kristi

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