Updated: Jul 5
Last week I was able to attend the United Mitochondrial Disease Foundation’s Mitochondrial Medicine Symposium in Washington DC. This was my second year attending the symposium itself and my first time attending Day on the Hill. Symposium is such a valuable experience and it is something I recommend that everyone with Mito attend at least once in their lifetime.
As soon as I walked through the hotel doors, I felt a sense of community. I saw wheelchairs, feeding tubes and vents, and yet, everyone had a smile on their face. I watched people reunite after being apart for a year or longer, and I watched people who talk online meet for the very first time. I saw friends I hadn’t seen in two years and instantly felt understood. That night at the mixer, I caught up with old friends and met new people from all over the world. We talked about struggles, accomplishments, and hope. When at symposium, it’s impossible to feel alone.
The next day was Day on the Hill, the day we go to Capitol Hill and have meetings with staff members from our senators and representatives offices. We tell our stories and ask for the change we need in order to survive. This day was so impactful because we were heard. We were real people with real struggles and not just a faceless community. It was a long and hard day, but it was worth it. Making change is never easy.
The following day was the first day of the family program; the day filled with presentations and workshops led by the best Mitochondrial Disease experts in the world. The information we receive is life changing and we get to hear about groundbreaking research that is going on. But that is only part of the symposium experience. The other part is the Mitochondrial Disease community.
Our small community is filled with some of the best people I’ve ever met. They are young, old, parents and children, but they all understand. Our community is kind and accepting. They embrace everyone’s differences and make you feel like you belong. The stories I heard from people I had just met were so touching. I cried on more than one occasion and developed deep bonds with strangers that I now consider friends. My life is better because of our small community.
Although symposium was physically exhausting, it was therapeutic. I received emotional healing that I would not have received anywhere else and developed connections I am truly grateful for. I took in information that will help me get a better handle on my health and have hope for advancements in Mitochondrial Disease research. Now, I’m implementing what I learned past week and am already looking forward to next year’s symposium!