A First Time for Everything: Marissa’s Running for Rare Story

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Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis and at seven, I was diagnosed with Reflex Sympathetic Dystrophy- a rare chronic pain disorder, leaving me unable to walk without assistance for a long period of time. Throughout the years, I befriended so many individuals with a variety of diagnoses through different patient organizations, charity events and waiting rooms. Although tough at times, I would not change a single detail of my journey. Instead, I am grateful that I was gifted with a passion early and given the ability to dedicate my career to the rare disease community. 

Within my first week at NORD, I applied to the Running for Rare Team for my first TCS New York City Marathon. I was so excited when I was accepted and immediately began my fundraising efforts to support NORD’s Undiagnosed Diseases Program. Luckily, the NORD family is incredibly supportive and my coworkers assisted in all of my events without hesitation, from gift basket raffles to restaurant fundraisers. 

I will be the first to admit that it was not always easy to put sneakers on when the early morning alarm went off, when it was raining outside or when the only thing on my mind was that endless “to-do” list at work. However, I knew that I was running with a purpose. Whenever I reminded myself of that, any excuses I had suddenly became obsolete. Fortunately, I was not alone in the training journey. In preparation for the 2019 TCS New York City Marathon, NORD’s Running for Rare team members kept in contact via phone calls, a group text and social media accounts. We shared training tips, fundraising updates and motivational messages. All of this virtual communication contributed to the thrill of finally being able to meet each other, in-person for the race. 

The marathon weekend kicked-off with the honor of being able to participate in the TCS New York City Marathon Opening Ceremony in Central Park on Friday night. This Parade of Nations brought together runners from around the world. The unifying sense of community continued into Saturday when the NORD team gathered for our pre-race dinner. I was grateful that my community partner Shaylee and her mom were able to join and show their support, which added to the overwhelming motivation to be Running for Rare. After filling up on pasta at dinner, the team said our goodbyes and prepared for our race in the morning. However, it was not easy to sleep with the excitement of the marathon! When the team met for our shuttle to the ferry at 5:30 on Sunday morning, we bonded over how poorly we all slept. We all seemed to be equally as nervous at the thought of sleeping through our morning alarms (luckily, no one actually overslept!) 

Before I knew it, the cannon was off and the marathon had begun. The race was without a doubt the largest party I have ever been to. For every stride of the 26.2 miles, runners were surrounded by live music, dancing, yelling and the occasional popping of champagne bottles! NORD even had our own cheering section! During moments when the race seemed tough, I thought about all of the individuals affected by a rare disease that I have met this past year while at NORD. They are the reason that I chose to run. I know that I truly could not have conquered the marathon without the entire rare disease community lifting me up. I am eternally thankful to be a part of NORD and to have had the chance to be a member of the Running for Rare Team!