How to Ride a Trike 62 Miles

Step 1, attend a conference in Minneapolis, MN where 225 of the most special people in the world, all living with or affected by myotonic dystrophy have gathered. That's what Spencer and I did August 13-15. Step 2, the next chance you get (which for us was the next weekend, August 20-23) get on your trike/bike, try not to think how far it is, and start riding until you've racked up 62 miles. Because of the first, we were able to do the second. There's a direct cause and effect relationship. Here's why.

Perhaps you needed to be in the room there in Minneapolis at the "Empower 2010 Myotonic Dystrophy Family Conference" to fully understand this, but I think the message was pretty clear: this thing called myotonic dystrophy has met its match. A bunch of determined, organized, and energetic people have found each other and won't stop working until there's a cure for myotonic dystrophy and the cure will be ASAP.

You could see it in the dedication of the great group of organizers who put the conference together and in the research docs and specialists who reported on their critical work. You could feel it in talking to the attendees, kids and adults and everyone in between, who are determined not to let myotonic dystrophy get in the way of their goals and dreams. But, perhaps most meaningfully of all, you could see it in the everyone's eyes. I talked to many, many people living with MMD at the conference. Every time, I saw determination and a commitment to do whatever is necessary to stop myotonic dystrophy in its tracks.

One of the most things most necessary right now is building on the research that has been done so far -- research that has tracked down the cause for MMD and is closing in on therapies.

Step 2, the 62 mile step, means so much more when you know you are in it with so many others who so determined. Step 3 comes in October in the Sea Gull Century. We will get there.