Thursday, August 16, 2012

A look at the 2012 Becker Muscular Dystrophy Conference

Since I was unable to attend this year's Becker Muscular Dystrophy conference I asked a friend of mine Lily Chan who was attending this years event if she might take the time to share with the readers of the My Becker's Story blog what it was like - to help give you a better idea of what the BMD conference is all about.

A look at the 2012 Becker Muscular Dystrophy Conference by: Lily Chan 

The fourth annual Becker Muscular Dystrophy conference this past weekend (August 11, 2012) at the University of Chicago was the first one I attended in person. Nearly a hundred and fifty people made the trip to the Windy City, and many more turned in to the live stream.

The invited speakers covered a wide array of topics: from talks on new therapeutic approaches, to Dr. McNally and Dr. Wolfe's presentation on heart and lung health, respectively, and Dr. Tseng's presentation on clinical trial participation, not only were the basic facts about BMD covered, but beyond that, more subtle ideas were communicated: how does one find the best team of doctors that will be necessary to manage the many aspects of BMD? How can I share my experiences with other people affected by BMD?
Guest Speaker Chris Rosa PhD
Speaker Dr. Chris Rosa of the City University of New York eloquently brought up the importance of the national BMD community. "We are the population that we all hoped for," he said, in reference to the BMDers today who, in part thanks to the improvement in clinical care, continue to live satisfying lives. There is still room for improvement, though, and in a sense, the advancements in clinical care is just the beginning: Dr. Rosa pointed out that these new "transitions" called for action to raise awareness and change public policies that might affect the daily lives--employment and education status, just to name a few-- of BMDers. None of this would happen, he asserted, without adequate data collection, which has the potential to spark changes in the greater community.

Indeed, the sense of community did turn out to be one of the most important take-aways from the conference. For me, the most exciting part of my Saturday was getting to meet the attendees, who not only came from all over the country, but also had all sorts of experiences with BMD-- some had only recently learned of their diagnosis, while others considered themselves rather well-versed on BMD-related topics. I was so excited to finally meet people like Kevin, Dan, and Gord in person, and speak to family members of BMDers (since I personally fall under that category) and hear each of their stories. For many of the attendees, the conference was the first time they had met other people affected by BMD in person.

1 comment:

  1. Feedback on the conference can be posted on the Facebook page: We are collecting comments and feedback so we can make the conference next year even better.