Every year I try to escape the real world for a couple of days and retreat with my family to probably my favorite place on Earth – Dowagiac. I’ve reminisced before, but this place is magical to me. It is my childhood, it is summer, it is magic. With so much going on in our community – thankfully! – it has been harder and harder to get away. But I wanted to spend this week recharging my batteries and visiting a place I love with people I love, Tom and my girls.
But even in paradise – at least my paradise – Duchenne still finds a way. Last night, my daughter Jenny and I were hungry for dinner. I suggested we try a place nearby. It happened that it was not open on Monday, so we headed into downtown Dowagiac. So, downtown Dowagiac is not exactly NYC. It offered two choices. Zeke's, closed on Monday…so we went across the street to the Woodfire, a lovely place with good wine. Our lovely waitress delivered us a wonderful dinner. She looked at me funny as if there was something wrong or maybe she knew me? She looked puzzled. I handed her my credit card and she returned, tears in her eyes. She was a Duchenne mom who knew PPMD and knew Coach To Cure MD. You see, last year all her son wanted was to see a Notre Dame game. His request went viral and we of course helped by sharing his story. She is particularly hopeful these days because her son could potentially benefit from ataluren (Translarna).
Anyway, a simple last minute dinner turned into something much bigger. Over twenty years into this, I am still shocked at how “un-rare” a rare disease Duchenne really is. On so many fronts, we are seeing real progress: in research, in care, and especially in Washington with both Congress and the FDA. But we are also raising awareness and telling our stories and connecting. And I think it’s important for us all to remember (because we don’t already have enough to do!) that there is value in telling our stories and talking about our kids and what they are dealing with. We have these tools that can connect us with people all around the world in seconds. We must keep using our voices to talk about Duchenne.
I’m looking forward to a couple more days of hanging out on the lake with my family. And I have a feeling we will be going to Woodfire again.
Share with us the most unusual place Duchenne has “found” you. Where were you or who did you meet when a connection to Duchenne popped up in conversation?