Disco For Duchenne
Posted on April 23, 2018
When I first heard of Duchenne Muscular Dystrophy (DMD) and The Little Hercules Foundation (LHF), I was surprised by how close to home it really was. The first thought in my mind was… I can’t even imagine.
The second thought was I must meet these families. For me, the strength of those families fighting for their children and the strides they had made in so little time was even more surprising. I remember thinking I wouldn’t be able to live through the days so patiently and so understanding in some ways, the way they do. This foundation, this beautiful thing they do, signifies that these families are not going to give up. They were out there fighting as a team, fighting as a family, fighting as a community. In that moment I said to myself, I must be a part of this and help in any way I possibly could!
As I became more involved in volunteering for LHF over the past few years, the gravity of it all sunk in. I quickly realized that DMD was actually more common and so much bigger than I had ever imagined. I realized these children I meet, talk with, sit with, get high fives from... all have one thing in common – they're wanting to be normal; they're racing against time; they're waiting for a cure. This disease is 100% fatal.
Knowing this is what made me bring Disco for Duchenne to life. I had always been raised to put myself in someone else’s shoes. How would I feel in the same position? What would I do? Would I overcome, or would I let this overcome me? So, with that being said, I wanted to create an event that would help build awareness – awareness that I didn't have a few years ago – and fundraise to support research and families supporting their child with DMD.
Disco for Duchenne is so close to my heart. It's my way of getting others to feel the same call to action that I felt the day I heard of DMD. Life is a beautiful thing, too often taken for granted. I know that my connecting others to LHF, maybe they can see what I see, put themselves in others' shoes, step up to the cause in some way. Then we would have an even bigger army of families and friends fighting to #EndDuchenne. I can say I am now fighting alongside of them and will not stop. Please join me.
About Megan Phillips
Megan Phillips is a volunteer and advocate for Little Hercules Foundation. She not only created the Disco for Duchenne event, but she also now serves on the Little Hercules Golf Classic Committee. She resides in Dublin, Ohio.