By Chris Anselmo — 03/16/2014
How I have never made it out here in my 27 years, I have no idea. It’s only a three hour flight from Boston, and everyone I’ve talked to raves about the city. So when I was offered the chance to come here and blog at the 2014 MDA Clinical Conference, I knew I couldn’t pass up the opportunity.
It’s ironic. I never made it out to Chicago when I was fully able, yet it’s because of my disability that I ultimately made it here. You know what though? I’ll take it.
Looking out my hotel window I am awestruck to see buildings and landmarks that I’ve seen on TV time and time again. The Chicago River is only a couple blocks away, green as ever for St. Patrick’s Day. Although it is very tempting to get caught up in my surroundings, take a detour, and cause mayhem like I’m Ferris Buehler, I am here for a very important reason, and I assure you I do not take it lightly.
In return for visiting Chicago for the first time, I have been given an important task — blogging from the conference from a patient’s point of view. As the conference is about clinical care for patients like me, my presence and input is vital. It is going to be an intense conference full of relevant sessions, and will test my limits of focus and caffeine intake. I will do my best to relay what I’ve learned and what I’ve found to be interesting and informative.
I look forward to meeting many wonderful people in the coming days who are contributing in one way or another to making the lives of muscular dystrophy patients better. We had a brief reception tonight, and I already have met people ranging from clinicians from Nebraska to a medical director at a biotech company near where I live. In fact, it’s amazing to see how many stakeholders come from the Boston area! I am not the best at breaking the ice, so to see so many others with Boston/Cambridge nametags makes for a much easier introduction.
I want to use this experience to truly understand the challenges, pain points, and cutting edge treatments in MDA clinics today. I’m glad that so many bright minds in neuromuscular care and research are in one place this week — knowledge sharing is so important when you are dealing with best practices for quality of care for people with muscle disease. I know that this conference will be candid in exposing just how far we have to go in improving the lives and outcomes of patients with muscular dystrophy, but I am ready to hear it all — what works, what doesn’t, and how it can be fixed.
Many of my heroes have come out of Chicago — Elliot Ness, Michael Jordan, The Blues Brothers. None of them however compare to the people who are working on making my life, and the lives of so many others, better. Those are the real heroes.