79 Days of Duchenne - What it is & how you can help!
Two years ago, my 7-year-old brother, Jacob, was diagnosed with Duchenne Muscular Dystrophy, an extremely fatal muscle disease in boys. Currently there isn’t a cure, and life expectancy is between the ages of 18-25. Initially, my family’s reaction to this devastating news was nonproductive. In the past year, each of us has begun doing our part to help Jacob and so many others in his shoes—we are literally racing against time.
On December 4, I released my song “Run Away” under my own record label—I have never released a song without the help of a label before, so this was quite a challenge in and of itself. We took special care to ensure that the only percentages retained from downloads of “Run Away” would be the amounts that iTunes (and other retailers) withhold on every download, and that’s it. (In many cases, record labels, publishers, songwriters, producers, and musicians would also try to retain a percentage.)
We made The Run Away Project (www.TheRunAwayProject.org) possible by paying every single cost out of our own pockets. My husband and I covered the majority of the expenses, which totaled over $10,000. CureDuchenne.org reimbursed $1,500 of the music video’s production costs, friends donated $600 towards recording costs, and many of the service providers lowered their rates on this project.
The result of all this means that 100% of the proceeds from “Run Away” will go straight to CureDuchenne.org—starting from the very first download. No costs will be recouped. We have already received a lot of media coverage and thousands of views and shares… Unfortunately, the word about Duchenne hasn’t been as big as we had hoped. To put a stop to this vicious disease, we need the help of other people raising awareness too, and this is where I think YOU could be a huge part in that. :)
There are 79 exons in the dystrophin gene; dystrophin is missing in the body of a child with Duchenne. Without dystrophin, muscles can never repair themselves and get stronger. The plan is to start the 79 Days of Duchenne, each day releasing a new video of “Run Away.”
How you can help:
ANYONE who would like to participate by performing “Run Away” in their own way is more than welcome. You can use absolutely any creative idea you have, no matter how strange or weird it might seem... Whether it’s you and a camera or you and an entire production team, ANY video will be greatly appreciated. With so many talented people coming together, all at once, I believe there is huge potential to raise MAJOR awareness for Duchenne. Would you please help with this project? Will you help my brother and everyone else with this devastating disease? Will you help Cure Duchenne?
Here is MY video to “Run Away”: www.SmartUrl.it/RunAwayVideo
If you also have friends, family or co-workers who might be interested, please pass this along. The “Harlem Shake” went viral with other people making videos, and I am hoping to create the same thing—but for an AMAZING cause. Here are some ideas of videos you can make:
Singing of “Run Away” in ANY style (pop, acoustic, rap, metal, reggae, rock, country)
Musicians playing “Run Away” (guitar, piano, trumpet, bag pipe… anything )
Dancing to “Run Away” in any style (ballet, tap, jazz, traditional dances, free style, hip hop, disco, interruptive dance, twerking…)
Spirited reading… reading of the lyrics in an emotional way (sad, happy, mad, excited)
Doing a crazy stunt to the music! (Not too crazy...LOL)
ANY other creative idea you can think of with the use of “Run Away” is more than welcome!
I really hope you’re interested in being a part of this project.
Download the project details at: www.smarturl.it/79Days
If you have ANY questions, inquiries or want to help in another way, please email me at [email protected] or call me at (724) 650-2867.
Important:
At the beginning of your video, please say the following in an intro, outro or message in-between (feel free to adapt it.)!
“Every day, people are challenged with explaining the severity of Duchenne to others who haven’t dealt with the disease personally. Most people are unaware of how Duchenne affects the muscles and the restrictions 1 out of 3,500 boys deal with. Truth is, most families have a hard time even saying the word ‘Duchenne.’ That’s where I [we] come in. I am [we are] the voice for the ones who can’t speak up. Currently there is no cure for this extremely fatal disease, but real progress towards a cure is being made.
Sarah Burgess is a singer who approached me [us] and asked me [us] for help. Two years ago, her 7-year-old brother was diagnosed with Duchenne. She wrote ‘Run Away’ to raise awareness and help her brother. Now I am [we are] helping her and ALL affected by Duchenne. Here is my [our] take on ‘Run Away.’
Together, we can Cure Duchenne. Together, we will Run Away!"
Send your video via email and do NOT release it! I will give everyone a specific date, and we will release the videos together, one by one.
Send videos & information about yourself to: [email protected]
Thank you so much for taking the time to read this, and I look forward to having you on board to help change the lives of those with Duchenne.
God bless.
Love,
Sarah Burgess
www.TheRunAwayProject.org
www.CureDuchenne.org