79 Days of Duchenne
79 Videos Raising Awareness to Find a Cure for Duchenne Muscular Dystrophy
NEWPORT BEACH, Calif., July 9, 2014 – CureDuchenne is pleased to launch the 79 Days of Duchenne project with Sarah Burgess, singer-songwriter and contestant on the sixth season of American Idol. More than 79 talented individuals created 79 unique videos to the song “Run Away” written by Burgess to help raise awareness to find a cure for Duchenne muscular dystrophy. Starting today, one video will be released every day for the next 79 days.
Every video captures the creativity of the performer, from More Like Me, a Tennessee rock group comprised of triplets who also had help from Robert Mason (Warrant) and Mark Slaughter (Slaughter), to a group of harmonizing sisters, sign language, dancers and puppets but each has the same universal message to help find a cure for Duchenne. The 79 Days of Duchenne videos include all music genres from pop, acoustic, rap, rock, R&B, country, Christian and opera. The project has inspired performers from across from the U.S. as well as internationally from Canada, Indonesia, Jamaica, Morocco, Philippines, Russia, Slovakia, Switzerland and the United Kingdom.
Burgess wrote the song “Run Away” to benefit CureDuchenne, a national nonprofit organization that raises awareness and funds research to find a cure for Duchenne. The Run Away Project was inspired by Burgess’ 7-year-old brother Jacob who lives with Duchenne – a progressive muscle-wasting disease that impacts 1 in 3,500 boys. Boys with Duchenne are usually diagnosed by the age of 5, are in a wheelchair by 12 and most don’t survive their mid-20s.
“Duchenne robs my brother and 300,000 boys worldwide of the ability to walk and run,” said Burgess. “Since I cannot give Jacob my healthy muscles, I will dedicate my life to saving his and all who live with Duchenne. We have 79 talented and caring individuals who have decided to be a voice for those affected by Duchenne.”
The number 79 has significance for the Duchenne community. There are 79 exons in the dystrophin gene. Dystrophin is missing in the body of an individual with Duchenne. Without dystrophin, muscle cells easily become damaged, cannot repair themselves and die, resulting in heart and breathing failure.
The 79 Days of Duchenne videos will be released each day on YouTube and can be found on the 79 Days of Duchenne website (www.smarturl.it/79Days). The first video features Addison Station, a Connecticut band influenced by Train, Bruno Mars, and Maroon 5.
“We are grateful for everyone who has participated in the 79 Days of Duchenne,” said Debra Miller, CEO and founder of CureDuchenne. “These creative videos will help us raise awareness, fund promising research and help accelerate clinical trials to find a cure for this devastating disease so we can save this generation of Duchenne boys.”
All the royalties for “Run Away” will benefit CureDuchenne. “Run Away” can be downloaded through iTunes and other popular digital music retailers (www.smarturl.it/BuyRunAway).
If you are interested in participating in the 79 Days of Duchenne project and creating a video, please contact Burgess. She can be reached on Facebook and Twitter, or through her website (www.sarahburgessmusic.com).
CureDuchenne is a national nonprofit organization located in Newport Beach, Calif., dedicated to finding a cure for Duchenne, the most common and most lethal form of muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 boys worldwide.
CureDuchenne has garnered international attention for its efforts to raise funds and awareness for Duchenne through venture philanthropy. With the help of CureDuchenne’s distinguished international panel of Scientific Advisors, funds raised by CureDuchenne support the most promising research aimed at treating and curing Duchenne. To date, seven CureDuchenne research projects have made their way into human clinical trials – a unique accomplishment as few health-related nonprofits have been as successful in being a catalyst for human clinical trials.
Sarah Burgess is a singer/songwriter and former American Idol (season six) contestant. The Pennsylvania resident released her first album, One, in 2008, followed by her newest effort, Just Me, of which she co-wrote nearly all of the tracks, in May 2013. Internationally, she was a finalist – and the first American competitor – in the Eurovision Song Contest 2011, and has recently completed her fifth tour of Europe.
Currently, she is partnering with nonprofit CureDuchenne (cureduchenne.org) to raise awareness and find a cure for Duchenne muscular dystrophy. Her song “Run Away” was written for her 7-year-old brother, Jacob, who was diagnosed with the degenerative disease two years ago. All proceeds of “Run Away” will go to CureDuchenne to fund research.