Experience at the PPMD Conference in DC

Going into the conference I was somewhat apprehensive. Most of the PAAC members met the night before at a restaurant across the street from the hotel. Once I saw the other members it put me at ease because I realized there were other people suffering from the same disease as me. I was interested to see how they had adapted to their own situation of DMD/BMD. The next day we began a long day of presentations. For me it was good to see other people coping with their disease just as I had been doing for many years. All of us were a group, of highly educated individuals fighting the fight of advocating for a cure. For me the conference gave me an opportunity to get out of the house for a weekend,and interact with others, for the group the weekend gave us a purpose. Having the ability to make a difference gives me hope for the future.

During the conference we heard from accomplished doctors,and educators working on the front line to find a cure. To me it was good to hear from  a doctor's perspective. It is clear that each doctor is working tirelessly. At the conference, the group decided what we would be working on in the year ahead. The key to the conference was getting our message out to the power brokers in Washington. We just need them to know if they give us the tools we can continue on our long journey towards a cure. We are all confident that Congress heard our message with the support they gave us during the conference. Going home I felt a sense of hope and optimism for the future.

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