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Archive for July, 2009

rainierI just came across this story and I thought it was worth sharing.  We have chose to support Charley’s Fund but there are very many other worthy charities and creative efforts aimed at fundraising to support research aimed at finding an effective therapy and even a cure for DMD.  Traditional fund-raising efforts are ongoing, but sometimes the disease and those suffering from it get more publicity and recognition from some of the less traditional efforts.  Darius Goes West is a great example of this.

Another is Climb to Cure Duchenne.  Several climbers from all over the U.S. will climb Mt. Rainier in Washington to raise awareness and, more importanly, funds for Cure Duchenne.  They hope to raise over $170,000 for the cause by having each of the 11 climbers collect $1 for each of the 14,410 feet of mountain that they will climb.  The story referenced above is specifically about seohone of the climbers, Thomas Seoh.  I wanted to share some of the quotes from the story because they express the hope and the sense of urgency that is swirling around DMD therapy at the moment.  He has experience in biotech and specifically in searching for treatments for DMD, so his thoughts certainly carry some weight.

“This is a particularly anxious and hopeful time because several experimental medicines are working their way through clinical trials and financial support now can help this generation of boys.”

“Some of them will be on the market in a few years.”

“We’re not looking for something that could be a cure someday.  We are seeking funds to apply to research that can help this generation of boys.”

If you can, please help.  Donate to Charley’s Fund or buy some merchandise.  Buy a Darius Goes West DVD.  Buy the Live Inspired App.  Every bit counts and every bit helps, and our collective efforts can make a difference for boys like Charley and Darius and all of the rest.  The time is now.

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Here’s the latest newsletter from Darius Goes West.  They were kind enough to mention Live Inspired and they’re doing a bunch of fun stuff to raise funds and awareness.  I think Darius and his crew are inspiring beyond words.  Please do what you can to help fund research for DMD.  We can all make a difference.

REMINDER…

STILL SPINNIN’

FIFTH ANNUAL

DARIUS GOES WEST DAY

(Now a weekend-long celebration)

July 17-18, 2009

Athens, Georgia

It’s all happening in just a few days, and we hope you’ll join the fun…

FRIDAY, JULY 17: FUN FOR ALL AGES

PRESBYTERIAN STUDENT CENTER

1250 S. LUMPKIN – 6:00 -10:00 PM

FREE – NO TICKET REQUIRED

Challenge Darius in his favorite video games! Check out the RV that’s traveled nearly 50,000 miles this year! (We apologize for any and all bad smells and/or general filthiness on the RV.) Dunk a crew-member in a tank of water! Toss a pie in a crew member’s face. Win a chance to ride shotgun in the 1969 Dodge Charger (pictured below) featured in Darius Goes West. Or help fight DMD by smashing a car with a sledgehammer! And much, much more! Entertainment will be provided by The Robert Prior Band and The Associates.

Major props to DGW 13th crew members Robert Sewell and Margaret Gaby  (with assistance from George Gaby and Anna Sewell) for taking charge of this event!

SATURDAY, JULY 18: MOVIE & “EXTRAS”

CINE THEATRE

234 W. HANCOCK STREET

3:00, 5:00 and 7:30 PM

FREE (But we recommend e-mailing or calling to reserve your seat)

At 3:00 and 5:00 PM, Darius and the crew will show new footage from this year on the road. Witness the insanity! At 7:30 PM, Darius Goes West will be screened in its entirety. To reserve a free ticket, please email dariusgoeswest@gmail.com or call DGW Headquarters at 706-613-7237.

SATURDAY, JULY 18: CONCERT

THE CLASSIC CENTER

300 N. THOMAS ST.

10:00 PM

PASTOR TROY, KILLER MIKE, AND THE NAPPY ROOTS

TICKETS: $5 per person (We encourage you to throw in an extra $1 when you buy your ticket to help fund the rebuilding of the Georgia Theatre)

Tickets, available at the Classic Center box office, online, and at the door. Doors open at 9:30 PM, and Pastor Troy starts promptly at 10:00.

ALL WEEKEND: HUGE SALE!

At all three events, DGW shirts and DVDs will be available for $10—that’s half off the normal price! (Proceeds still go to the fight against DMD.) Also, be the first to collect the brand new, $25 Darius Bobblehead, available starting DGW weekend!

THANK YOU DGW WEEKEND SPONSORS: ABC Printing, The AdSmith, Athens Banner-Herald, Athens Classic Center, Athens First Bank and Trust, Barberitos, Barron’s Rental, Budweiser, Cine, Coca-Cola, Family Connection Communities in the Schools Program, Gray Man Creative Enterprises, Harry’s Pig Shop, Tom Henson DDS, Jittery’ Joe’s, Mama’s Boy, Marti’s at Midday, Presbyterian Student Center, Neal Pylant, D.M.D., P.C., Raymond James Financial Services, REM, Shirtworks, Stickman Design, Winder Insurance Center and Zaxby’s.

ALSO, special shout-outs to Kitty Wilson (grandmother of DGW crew member Dylan Wilson) and  DGW 13th crew members Lucy Rowland and Anita Will for their generosity in making DGW Weekend possible.

Hope to see you there!

DARIUS AND LOGAN NAMED “CHANGE IT CHAMPIONS”

On June 27, Darius and Logan traveled to Atlanta to receive a “Change It Champion” Award at the Parent Project Muscular Dystrophy’s Annual Connect Conference. PPMD is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. The organization’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion.

Darius had a blast at the conference banquet, where he was able to meet many fans who had seen Darius Goes West. He and Logan also lingered with attendees for over an hour, posing for pictures and signing DVDs. Thanks, PPMD, for this huge honor!

HELP FUND DMD RESEARCH (FOR LESS THAN $1)

If you have an iPhone or iPod Touch, please consider downloading the Live Inspired application. By doing so, you’ll help fund DMD research.  Live Inspired provides a daily inspirational quote and photo that prompts personal growth and reflection. The app is priced at only 99 cents, and 10% of your purchase price will be donated to Charley’s Fund.


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Bee-Purple-Flower-MacroWe ran into a bug with our previous update and the release of version 3.0 software for the phone.  Our developers worked very hard to address this and get it submitted and approved, and as of today the update is available.  This update addresses the connection issue that was causing the error.

Thank you all for your patience and feedback.  I hope that we can all work together to improve our offering and make a difference in our own lives as well as the lives of others.  Even your comments and involvement are inspiring.  Thanks again.

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