It is hard to believe that just over a year ago, I was gearing up to host my very first virtual race, and now, with race registration opening in just one week, this will be my third time acting as a race director. I have big dreams for our nonprofit, but one of my short-term goals for our 2020 race is to have at least 300 participants, and I sure hope that you will be one of them!


When I joined the Running for Rare charity team for the NYC Marathon, I was overwhelmed with the amount of money I needed to raise for NORD, but begging people for money isn't in my repertoire; I wanted to make my fundraising more meaningful. As I mentioned in my first post, SEE RARE BEGIN, SEE RARE RUN was born during this time period, and although I was excited at the thought of finally building community within the rare disease realm, I also felt very vulnerable because opening a virtual race also meant I had to open our private rare disease story to the world. After many prayers and conversations with Marcus, I finally made the decision to host the first virtual race the weekend of October 5-7, 2018. Trigeminal Neuralgia Awareness Day is observed every October 7, and since TN is the entire reason for trying to navigate the crazy world of rare diseases, so I knew the date was perfect.

Race registration opened in July, and I initially spent time on promotion (and by "promotion" I mean word-of-mouth and a poorly-run Instagram account). During the months leading up to race weekend. I wrongfully assumed that if I gave away free "stuff" that runners love (sunglasses, gift cards, fuel), I would magically be voted RACE DIRECTOR OF THE YEAR and have VIP-donation status to NORD. Each month, Marcus and I made out-of-pocket purchases for running-related products that we loved to give away to random race registrants. We spent a ton of money, and I unashamedly subjected Marcus, my friends, and my dogs to amateur modeling gigs in order to promote these giveaways. At the end of each month, despite the less-than-stellar registration numbers, I giddily spun the digital wheel to pick a winner!

The weekend of October 5th finally came around, and I waited nervously for how the race would play out! Would participants actually participate? Would they tag us on Instagram? Why can't I run in my own race (at this point, I was nursing a metatarsal stress fracture and would soon become a "DNS" for the NYC Marathon). Yet, despite my anxieties, I couldn't have been more thrilled with the outcome. I cried while reading posts written by some of our "non-family and friends" participants as they shared their own rare disease stories or spoke highly about giving back to our cause. I no longer felt ashamed on Trigeminal Neuralgia Awareness Day because I knew that I had turned some pretty sour lemons into a lifetime of lemonade.


All in all, we rounded out the race with 47 participants, most of whom were family and friends, but I couldn't have been more excited to raise a total of $970 (additional donations included). I remember feeling overwhelmed with thankfulness as we hand wrote every "THANK YOU" note and packed every race bag. It was while sitting at my kitchen table, assembly line going strong, that I asked Marcus, "What if we did this again? Do you think we could make it a yearly thing?" Without hesitation, he began brainstorming how to improve the race, and we immediately set our sights on the next phase of planning.


Most people who know me, especially Marcus and my 125 middle school students, would agree that I am a pretty impatient person. I couldn't fathom the possibility of waiting an entire year to host our SEE RARE RUN virtual race again, but I didn't want to choose a date that lacked a connection to our cause. We settled on the race being held the week leading up to Rare Disease Day, a day that is internationally recognized and celebrated on the last Saturday of February each year. I modeled the "race day" after our first virtual race, opting to give runners more time to get in their 3.1 miles (oh, the beauty of a virtual run!), so the race was held throughout the period of February 22-29, 2019.

My goal for the second race was to find new channels for promotion to ultimately increase the number of race registrations. While I continued using Instagram, adding new tags where I could and spending all too much time trying to curate the perfect photo, I also chose to list our race on Rare Disease Day's website. Being that Rare Disease Day is international, and organizations from all over the world use the site, I crossed my fingers and hoped that our personal race site would see increased traffic, and, if we got lucky, more people would sign up. While many of October's participants signed up again (seriously, our runners are the best!), I couldn't help but notice that registrations were coming in from all over the country. I'll never forget being in the middle of second period at work and having shut off my phone because I was receiving nonstop email alerts. Little did I know that those alerts were from RunSignUp, the company we use to manage our race registrations. Registrations from companies like Cello Health, Synlogic, and Ascendis Pharma, companies that I had never heard of, were rolling in, many with additional donations. Thank goodness for the Rare Disease Day listing, and thank goodness for these companies for partnering with us!


We did a few more giveaways, bought some stickers with our logo printed on them, and rehired our Etsy artist for a new medal. Rare Disease Day arrived, and with the help of our 151 participants and additional donors, we were able to contribute almost $2,500 to NORD! "Grateful" didn't even begin to describe how we felt closing out our second race. As we sat at our kitchen table, coffee poured and race bag assembly line set (God bless Marcus for taking care of about 95% of those handwritten "THANK YOU" cards), we knew we made the right decision to bring our story to light, to make connections with others in the rare disease community, and to find a way to make our love of running not so much about us.


Race registration for our 2020 race opens on OCTOBER 1, and we can't wait to see the impact this year's race will have on the rare disease community. This year, runners and walkers will have the option to complete the typical 5K distance OR a new 5 mile distance on February 29, 2020. A medal design is in the works, and we will have more giveaways, of course (who doesn't love free stuff?!). We have been so blessed by our race participants and donors, and we hope that everyone from our past two races will join us again. Tell your friends! Tell your family! SEE RARE RUN is all about doing good for a community that deserves a whole lot of love. Mark those calendars for our favorite version of OPENING DAY, and give us a shout if you have any questions or suggestions for giveaway prizes.


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