A few months ago, I got an invitation from some other parents of children with GM1 to hold a conference call. We formed a task force to see if we couldn't push our fundraising efforts to the next level.
A day or so after the call, my husband said to me, "you should write a song to help raise funds for GM1." I had never even thought of that, or really believed I could do it. I thought, "That's nice that my husband believes in me....but why didn't I think of that?" I got excited and started working on it that night. I came to him with my first draft, of course enthusiastic about it and he said, "no, no, that is not a chorus, keep working on it." A few days later, I shared my progress with him. He said, "I like this, but not this, keep working on it." I went back to the song, crying and pouring out my soul in the process. I played it for him again and he said, "it's getting there...but this part needs a little something different". Then one day when I was playing the song for him, he began to cry and said...."It's perfect."
We then approached our friend Bodie Brower from Utah and asked him if he could record it for us during our next trip up there, (we already had a trip to Utah planned to see our family that next week). Him and his wife generously donated their time and resources to record it and we were so happy with the results.
We then began to work on the video. We didn't know what we were doing at all, but kept filming and working. We showed draft after draft to friends and family who gave us awesome feedback and advice, until at last we felt good about it.
We posted the video on YouTube 3 days ago and shared it on social media. Our friends and family have been so supportive so far in watching and sharing the video, downloading the song as well as donating. Our friends and family have already done so much for us, we'd really like to spread the song to a broader audience and have been working to try to get it out there. We are following any lead we can think of. Hopefully we can make a difference and help get GM1 research to the clinical trial phase.
We've set up all things social to help get this going:
If you want to help us spread the word, please follow, subscribe, download, share, like etc.
YouTube Video Link: Sweet Angels (Cure GM1)
Download on iTunes Sweet Angels
Download on Google Sweet Angels
Download on Amazon Sweet Angels
100% of money donated Here goes directly to CureGM1Foundation
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