How many times have you explained something that happened, but in the retelling, the moment lost its punch?

I’m a fan of technology. Really. I love it that we are able to participate in meetings and conferences in real time, from anywhere in the world. It encourages, incentivizes, stimulates conversation on community and social networking sites. In fact, many of you streamed during our West Coast Connect Meeting on Saturday. But while all of that is fantastic, there is something significant about being there. Something happens when the community gathers. There is an exchange that occurs, science and medicine aside…the connecting part of the West Coast Connect Meeting.

You had to be present during the reception when a new mom walked tentatively into the room. It was pretty clear she was new, the diagnosis raw. She had that look in her eye, tears welling in the corners, the weight on her shoulders obvious. We have all been there. Within minutes, people gathered around her, introduced themselves, asked questions, listened and then gently and tenderly brought her into the room, introducing her to researchers, clinicians, and other families. Her shoulders relaxed and after a few minutes, there was a smile.

We have all said time and time again, that we wish we had never heard the word Duchenne. But there is a lining… bronze, silver, gold… call it what you will. The Duchenne community is a family and when members of the family gather, there is a synergy, a spirit of kind-heartedness, helpfulness, empathy, hope. There is something to be said about connecting, not only with the families, but with researchers, clinicians and industry partners. There is something transferred in the conversation, that is not captured on-line – the intense desire to change the predicted outcome, clarification on timelines, what we can do now, optimal medical care across the spectrum, trials in progress or in development…and hope.

We will be posting presentations from our West Coast Connect Meeting in the coming week. Thank you to everyone who attended, presented, and watched us online. We hope everyone who can will join us at the Annual Connect Conference in Fort Lauderdale on June 28 – July 1 for more great presentations, critical information, and connecting.



Pat Furlong, Founding President, CEO
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Comment by stephen beggs on April 19, 2012 at 3:58pm

well said pat, speaks volumes. Extremely well articulated to how we all feel. Looking forward to catching up with the presentations from the recent west coast connect meeting.

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