LITTLE MITCH, HENRI, AND ADVOCACY

This afternoon I had the privilege of doing some advocacy with Senator Romney's office and Representative Burgess Owens' office. I have never really stepped into the advocacy space, so this was my first real thing. I was thrilled to see Rep. Owens show up personally. He was engaged in the conversation, asked meaningful questions, and saw the bigger picture. I was so inspired by how Rep. Owens showed up - and in more ways than one.

I was lucky to follow my good friend and fellow DMD father, Dr. Jeffery Bigelow, a neurologist who has a boy the same age as Mitch. I'll never forget the day I met Jeff. A few years ago, I spoke in Florida at a conference, and he approached me with tears in his eyes. I could tell how deeply he loved his son, Henri, and how much he wanted to do something to help him. I have a great deal of respect for that man.

Jeff had done advocacy work before - and while I was lending my voice and sharing in the conversation, I was also taking notes, learning how to become a better advocate.

We were asked to share our story briefly, then present two asks. We both wore PPMD shirts to show solidarity.

As I shared a 90 second summary of my son's life, I also described why I'm still here (writing, trying to serve PPMD and the DMD community), and I felt an unexpected title wave of emotion build up within me. It took everything I had to keep my tears from pouring. I was overwhelmed with empathy for families who have children with the same muscle-wasting disease like my son. I want to help them avoid the same pain we felt. Though I am a toddler in the advocacy space and basically know where the door nobs are, I want to learn more and follow my friends who have done this before.

I'm also in awe of Pat Furlong and Parent Project Muscular Dystrophy (who tried to save little Mitch); their leadership, vision, and organization are a testament to what we can do when we work together.

Today I miss my little boy, and it kind of really hurts—a lot. Most days, I'm okay - but right now, everything is especially tender.