By Katrina Gossett – 03/20/2014
Today was the last day of the 2014 MDA Clinical Conference. On my drive home, I took stock of everything I felt after these four days in the Windy City. I was more than a little exhausted after all the presentations, lively discussions, and new connections. But more than that, I left the conference feeling excited and even emboldened.
For four days, the MDA had brought together some of the best and the brightest in the field, and I had an opportunity to learn from them… and sometimes to teach them as well.
This conference provided updates to health professionals as well as families dealing with neuromuscular conditions on potential treatments in the future, as well as current standards of care, and cutting edge technology available today, such as robotics.
We learned about new and exciting studies on changing genetic codes to provide possible treatments for conditions like SMA, Duchenne’s, and ALS. What was once sci-fi may soon be a reality, and the MDA is playing a big role in that transformation.
Perhaps even more exciting for me was that one of the major focuses of the conference was promoting the emotional well-being of those served by the MDA and their families. Often medical professionals focus on the physical side of treatment—the biology, and the psychological and social side will fall through the cracks. But these folks were actually enthusiastic about discussing and learning more about those exact issues, including transitions to adulthood, depression, general emotional health, and sexuality for people with neuromuscular conditions.
It was at this point that those of us at the conference actually living with neuromuscular conditions had an opportunity to share our expertise. Danielle Sheypuk, a conference presenter and a brilliant psychologist who has SMA, and I both shared our experiences with the medical professionals, so that they might better help their patients back home when confronted with difficult and unique issues of emotional well-being. So many of the professionals at the conference told me they appreciated our input and perspective, as it might help them better understand some of the challenges their patients may face.
I truly appreciated this tone of collaboration throughout the conference. It was clear that the MDA’s goal was to bring people together so that they could learn from each other, and then better serve their communitiesback home. Part of this collaborative effort was learning from those they serve, both through the lively discussions Danielle and I participated in, as well as the family forum held Tuesday, where families affected by neuromuscular conditions could ask the questions that mattered most to them.
Overall, the 2014 MDA Clinical Conference was buzzing with passion. Passion for knowledge about the latest potential treatments. Passion for providing the best treatment now to people living with neuromuscular conditions, from helping them breathe to helping them have fulfilling relationships. Passion for creating a community where dialogue can happen, so that every person served by the MDA can benefit from that shared knowledge.
I left the conference on a mission to share everything I learned, and I know that every professional at that conference has the same mission. We are progress!
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