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I Wrote a Song To Fight Rare Disease

MARCH 28, 2016
When a loved one is diagnosed with a rare and terminal disease, it can make us do some crazy things. Many of us become depressed, anxious, fearful, obsessive. Our lives feel like they’re spinning out of control.
 
Slowly, we learn to cope in our own unique way. We might take up a hobby. Try yoga. Drink a little more.
 
Some of us write.  
 
We write both to help others and to help ourselves. And sometimes, the writing is quite personal. It was like that when I wrote and produced our ProjectAlive.org campaign. It was born from a personal experience – a photo sent home from my son’s teacher that said he wanted to be a fireman when he grew up.
 
But I knew truly, he just wanted to be alive when he grew up.
 
“I want to be alive, that’s my only dream / But for some of us, it’s harder than it seems / I want to live my life, grow into a man / I want to watch my mom grow old and hold her hand / I want to be alive.”
 
I wrote those lyrics and the rest of the song “Alive” while we were in production for Project Alive. It poured out of me as I listened to my son’s whistling breathing from his bedroom nearby. He slept soundly, for now, as I dreamed of his future.
 
I also dreamed of a world that knew more about rare diseases like Hunter Syndrome and the heartache they caused. Cared about whether these diseases had treatments and cures. Looked upon our situation not as one that “other” people have, but as one that we face as a society together, as families, as parents, as people.
 
“Alive” is now sharing that message, as a finalist in a major, global songwriting competition. It is also up for a People’s Voice award that is voted on by the public daily until April 15th. Please help us share awareness by voting for “Alive” every day at bit.ly/votealive, sharing it, and asking your friends to vote and share as well.

And check out the lyric video we've produced to share the song as well.




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