After 14 years of holding conferences, writing a review should be relatively easy and in some ways it is. Parents and family members gather to learn, to find something, to understand better, to gain strength. Some are new to the diagnosis, the word Duchenne muscular dystrophy a recent addition to their vocabulary. They are raw, tender, bruised and brave making the decision to attend and commit three days of precious time. It is amazing to me to see the community, sitting, attentive, at times fighting tears, but listening, always listening, hoping for that on bit of information that they can use, take home, pin their hopes to.
I am not planning to provide a scientific review of the conference. Guenter Schuerbrandt will do that for us. In addition, we will post some of the powerpoint presentations (other than those deemed confidential by the presenter) and soon after pod casts of some of the sessions.
One session not to miss is the Expert Panel. The panel, comprised of 5 young men with Duchenne and Becker muscular dystrophy spoke, eloquently to the audience about their view of life, their quality of life, their dreams, expectations. Maybe for some in the audience, their obvious love for life came as a surprise. All too often we look at others and make some predetermination about the quality of their life, based on our expectations, our wishes, our dreams. Conrad Reynoldson said it best “I may have a gene deletion, but I don’t have a dream deletion”.
As parents we watch Duchenne steal function and with each blow, it feels like we die a little bit and I think we guess that our son feels the same. After listening to the Experts, it feels a bit different. We do want to EndDuchenne. We want to stop progression in every individual diagnosed with Duchenne or Becker muscular dystrophy. At the same time, our message to our sons must be that we love them, that life is good and each day important and relevant.
The conference was a success in so many ways, but our sons are the real success story.