Updated: Sep 17, 2019

How running fueled my desire to serve the rare disease community

(2017 Run at the Rock 14-mile trail race)


I haven't always been a runner. In fact, until my early twenties, the thought of running was disgusting and, truthfully, intimidating. "You want ME to run for reasons other than to take the cookies out of the oven?" HA! I often scoffed at my then boyfriend (now husband) when he suggested we go jogging. Running is for fast people, I told myself. I was too embarrassed to run in front of other people, always unsure if my form was correct and overly concerned that someone would judge my pace per mile. It's a shame that I lacked confidence in completing an activity that I had been doing since I could walk!

Amazingly enough, signing up for my first 5K progressed into running (soon-to-be) six marathons, and years later, my love and appreciation for the sport has proven to be immeasurable. I often look back and wonder how I ever managed the stresses of life without running! To me, there is no greater feeling than tightening the laces on a worn-in pair of kicks or breathing in the scent of pine while exploring neighborhood trails.

Running is simply putting one foot in front of the other, but this act became much more symbolic to me in 2014. My husband, Marcus, began his rare disease story that year, one on which I will elaborate in a future post, and running proved to be the most reliable friend. Putting one foot in front of the other every time I ran allowed me to maintain that same mindset in my marriage: remaining steadfast, even when life placed so many hurdles in our path. I made a vow to myself and Marcus to remain strong and positive, and staying dedicated to the sport of running allowed me to be just that.

I continued to progress in the sport but felt that we were going backwards in the disease. We were so isolated, misunderstood, and felt too vulnerable to share our struggles with others. I was dissatisfied with running, despite numerous PRs, and I knew that something was missing: community. Running had always been about me and for me. However, in 2018, I joined the Running for Rare charity team for the New York City Marathon. Finally, I found a group of likeminded individuals, both those with rare diseases and loved ones of those suffering, to bond with while also raising awareness for the community.

Enter: SEE RARE RUN. I started the SEE RARE RUN virtual race as a way to fundraise for my charity team, but double injuries kept me from running the marathon. I decided to continue with the virtual race since the cause is so important to me, and I had so much fun hosting the race in October 2018 and again in February 2019 that I didn't want it to end! The friends I made, the money we raised together, and the miles we shared in spirit brought so much purpose into my life and inspired me to continue working on behalf of the rare disease community. Therefore, I made the decision this summer to incorporate SEE RARE RUN as a 501(c)(3) nonprofit organization. The running community is incredibly widespread, as is the rare disease community, and I am confident that we can use our natural-born gift to make others' lives better.

Did you know there are more than 7,000 rare diseases and disorders, and approximately one in 10 Americans suffers from a rare disease? The needs are there: financial assistance, education, patient advocacy, and SEE RARE RUN is here to help serve those needs.

Whether you choose to run ultramarathons or walk a couple of laps around your block, there is a beautiful therapy in exercise, and we would love to build community with you as we lift up our friends suffering from rare diseases! Proceeds from donations and race registrations will support the National Organization for Rare Disorders, INC.. I can't wait to see where life takes our organization, and my hope is that, in the future, we can continue to add programs that further support the rare disease community. Won't you join us February 29, 2020? Cheers to the beginning of our story; we hope you will be a part of it!

Happy running, friends!

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