Sitting still is difficult for me. To say I prefer to stay busy is a bit of an understatement. Ask my wife Alice if she thinks I'm doing too many things. Between work, family, my involvement in DMD programs and running there isn't much free time left. When I do get a minute or two I'm thinking of my next task as rewording an e-mail or working out details for a project, otherwise if I sit too long idly I begin to doze off. Some Sundays as I sit in church with my family I catch myself dropping off (My mother would be horrified!). Its the same feeling I would get when Alice and I used to drive to Ohio for vacation and I had been driving too long and the lines in the road hypnotized me so I would pull over for a break. Not a good feeling on the road and in church as I wonder who is seeing my eyes roll to the back of my head or waiting for Alice to elbow me sharply in the ribs.
Today I've been thinking about the Annual Conference. Having a child with DMD is not easy, yet there are resources and PPMD's Connect Conference is my yearly dose of revival. No, there's no tent style ministry or heart lifting gospel singers, but I get a similar "spiritual" uplift that helps me for months to come (No blasphemy intended!). Not only am I able learn what researchers are doing and thinking, I also meet other families slogging through the DMD minefields with grace and hope. We all know we need each other.
My first conference was in Pittsburgh so many years ago. Alice stayed home with the children and I went seeking information and hope. What I got was little sleep and sensory overload with the first taste of learning that I wasn't alone anymore. That year I attended back to back sessions trying to squeeze so much out of the day, then by night I met up with many other parents and researchers staying up way too late only to repeat the process the next morning. I brought home the conference binder and studied the materials helping me to become more familiar with DMD pathology and research principles and goals. I also collected several e-mail addresses from people with whom I remain in contact today. Since that conference I've learned a better way to participate. I tell families attending for their first time to think of the conference as going to Disney with young children. If you take them on every ride, everyone is exhausted at the end of the day and the kids are screaming. It is the same with the conference. Balancing what you do while taking time to absorb information makes for a better experience and is much less tiring.
When PPMD releases the conference agenda I look over the sessions and presentations. After deciding what interests me most I choose which discussions I will attend. In between I've learned that talking to other families in the lobby is just as important. I haven't lost that urgency for research, yet I'm pragmatic, so I know life goes on while we wait for the process to move forward. What better way to plan for the changes affecting our sons and our families than by speaking with others who have been through the same thing.
Deciding which sessions to attend can be difficult. Some people are more interested in research while others focus on care. Fortunately there are enough things going on to appeal to both. The conference is organized to build on the first day discussions about the basics of DMD with more advanced research and care sessions on the second and third day. Other topics of interest such as advocacy, family life and school related issues are offered as concurrent breakout sessions.
The conference is well worth the time, travel and expense. We all need that "shot in the arm" to help us keep moving. Whether it is the promise of a new therapy, ideas for your son's IEP or meeting another parent who understands what you are dealing with every day, attending the Connect Conference is good for the soul. I'll be there, so let's talk and work on this together and I promise to stay awake.