By Chris Anselmo — 03/20/2014
Where have the four days gone?
I am typing this from the comfort of my chair in Boston, wondering how a conference I was so eager to attend can now be referred to in the past tense.
It was an absolutely fantastic experience to be able to attend the 2014 MDA Clinical Conference in Chicago. From the outset I marveled at the sheer number of people affiliated with the MDA (and those at private companies) who were here in one place. The best and the brightest from all fields - together to share information, ideas, best practices and pain points.
These types of conferences have a real positive impact on patients. At the end of the day, we are the real winners from this knowledge-sharing and collaboration. Although most of the knowledge being presented was complex, and involved medical jargon that would take me years of schooling to understand, there was a significant amount of content that was accessible to all. Human emotions, compassion, the ups and downs of muscle disease – that is something that everyone can understand.
During the conference, I enjoyed the opportunity to walk around (I took it slow!), look at the different posters and vendors, and meet people from all over the country who are on the front lines fighting muscle disease. I met people from California, Oklahoma, Minnesota, and Nebraska. Everyone was extremely nice and it makes me happy to think that these caring people are the ones who are helping the lives of neuromuscular patients throughout the country. Sometimes doctors and clinicians in other fields can be dry or humorless – but it’s nice to know that with these professionals we are in great hands.
I also had the opportunity to meet Katrina Gossett, a fellow Transitions blogger whom I was excited to meet. Katrina, I’m very thankful to have had the opportunity to meet you! Thank you also for not talking in lawyer-speak at any point.
From what I was able to gather, the breakout sessions were a new format, and it was a great success. To have simultaneous options going on at once was a fantastic way to maintain interest for all attendees, and give us the opportunity to attend talks that may be of particular interest. For myself, this allowed me the chance to attend sessions related to behavioral health and exercise strategies, which I had wanted to see going in.
Besides meeting so many wonderful people, my main take away from this conference was the great emphasis on the patient as a person, in addition to someone with a disease. I found the sessions related to emotional and behavioral wellbeing especially insightful, in addition to the session on pain - topics that I’ve alluded to in previous blog posts. I am also thankful to the MDA for hosting a Family Forum that was live-streamed on the internet. It was an excellent opportunity for families throughout the country to learn about the topics presented at the conference, and ask questions to experts in the field.
I also was blown away by the courage of the two moms speaking about their deceased sons, and how their story ties into the larger story of the human impact of our imperfect genetic codes. I learned a great deal about the role of genetic counselors, and the many ethical and sometimes ambiguous decisions related to genetic testing – when to do it, what it involves, and the long list of pros and cons.
I could write a thousand more words on my experiences, and barely scratch the surface. At the end of the day, this conference exists because many patients are born with life-altering diseases – life altering not just to the patient, but to their families as well. I wish we didn’t have to have conferences like this, and perhaps in the future we won’t need to anymore.
Until we get to that point, one thing is clear about the present: When you bring together so many stakeholders in the fight against muscle disease, with a fantastic organization like the MDA leading the way, only good things can happen.
Whether you are a patient or a family member, you can take comfort in knowing that everything that can possibly be done is being done. There are thousands of wonderful professionals throughout the country who are on our side, and are with us every step of the way.
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