by Meaghan Paulosky
Imagine being a child again, learning to walk for the very first time. Propelled by the pride of your parents, your chubby little legs buckle in your quest for independence.
Now, imagine that after your falls and frustrations, your newfound autonomy is stripped away. Despite your efforts, a tiny anatomical message is inciting mutiny.
Walking and normal muscle function requires an adequate supply of the protein dystrophin. When there is a dystrophin mutation, or mutinous message, protein levels drop and movement is restricted. Termed Duchenne Muscular Dystrophy (DMD), this condition is a pediatric form of MD because it is typically diagnosed during the formative stages of walking. Affecting one in nearly 3,500 boys, DMD is extremely progressive, escalating from physical limitation to paralysis and eventual mortality. There is no current cure for DMD, but there is hope.
Scientists have found that some DMD patients undergoing stem cell therapy were able to increase their dystrophin levels, markedly improving their condition. Ryan Benton is one such patient that has stepped up to make himself an advocate for the controversial therapy. At just three years old, Benton was diagnosed with DMD, and after almost twenty years, time was not on his side. Then one day, he got a call from Dr. Neil Riordan.
In 2005, Dr. Riordan and his team opened an institute as facility for the research and development of stem cell therapy. Due to legal barriers in the United States, they had to take their work to Central America making treatment virtually impossible for some.
For Benton, the treatment has only been beneficial. “I haven’t seen any negative side effects. Every time I am treated I noticed an increase in strength, which leads to better mobility.” He has even seen quantitative benefits, noting a near doubling of his dystrophin levels, something of substantial promise to others afflicted with DMD.
“For the last five years we have been fighting the FDA to make this legal here in the states. We are optimistic that this will happen soon, but it needs the public’s attention,” says Benton
To kick-start the effort, Benton started “Coming Together for a Cure.” His first benefit event brought in more than $15,000 for the stem cell clinic. This year makes his fifth and Benton has decided to raise the bar.
“At the tail end of the 2012 I began thinking about putting together a second benefit CD. This time around, I wanted to find a way to bring the CD along with the cause to a more national audience.”
He reached out to friend David Lord who conveniently runs Air House Records in Wichita, Kansas. Together, the two compiled a list of incredible artists through connections from Benton’s own band with others that simply wanted to get involved. Benton’s learned, “If the cause is great and genuine enough it won’t be that difficult to get people you’ve never even met before involved.”
Maybe it’s the good will of the bands or maybe it’s impeccable music taste, but, somehow, every single track on the record manages to be the best one. It’s packed with singer/songwriters, folksy bands, a few rock bands that sounds like your-brother’s-friend’s-
All proceeds go directly to adult stem cell research and therapy; while circulation of the CD raises much needed political awareness. The album includes songs from Thee Oh Sees, The Shine Brothers, and thirteen others. A full track-list and info on how to download a copy can be found on the Air House records website. The album comes out today, so take a look and hopefully you can help limit the effects of Duchenne Muscular Dystrophy.
