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SEE RARE RUN THE BIG APPLE


The Big Apple. The City that Never Sleeps. The Capitol of the World. Gotham. New York City. The New York Times reported that an estimated 65 million tourists visited the city last year, and it is no wonder why. New York City is undeniably magical. Perhaps aspiring actors come to bask in the bright lights of Broadway, and art aficionados stopover to study pieces hanging in the grand halls of the Met, but passionate runners, both elites and amateurs alike, travel to the city for the same reason: The New York City Marathon.


The New York City Marathon has been around since 1970 and became one of the World Major Marathons in 2006. It is the largest marathon in the world, and the draw to run 26.2 miles through five boroughs and earn one of the coveted medals is apparent. Approximately 105,000 people entered the lottery for the 2018 race, but only 15 percent were accepted. Even still, more than 52,000 marathoners crossed the finish line, and an estimated one million spectators lined the course. Yet, the most impressive statistic, the one that outshines all the rest, is that an estimated $270 million has been raised for charity since the marathon's Official Charity Partner Program kicked off in 2006!

I debuted my Running for Rare team singlet this summer in Raleigh's Dix Park sunflower fields

While I am over-the-moon to start my marathon journey to the sound of a cannon blast and Frank Sinatra's "New York, New York" and to later hit "The Wall of Sound" as I exit the Queensboro Bridge onto First Avenue, I am most excited to play a part in the race's ever-growing charitable contributions. Being a member of NORD's Running for Rare charity team is incredibly humbling. My rare disease story is only one of millions, and I have been fascinated and inspired by my Running for Rare teammates as they have consistently trained through the summer (and the fall that feels like summer!) to prepare for the upcoming marathon. Although I have not yet met my teammates, learning their stories and following along with their journeys has often been my source of inspiration, especially when I struggled to push through tough hot and humid workouts or fit in my miles during busy and exhausting days at work.


This group is incredible, and I am so excited to share some of their rare disease stories below! By signing up for SEE RARE RUN's virtual race or making a donation to our organization, you are also supporting our Running for Rare team's efforts during the New York City Marathon. All SEE RARE RUN proceeds made between October and December will be donated specifically to the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program, which is the same program that benefits from Running for Rare's charity team.


While you may not be able to cross the finish line in Central Park on November 3, by supporting SEE RARE RUN, you will definitely be with us every step of the way. In fact, please reach out via email or on social media if you would like your name added to my race singlet! I would love to personalize it with as many rare disease warriors as possible!


We are thrilled to be able to take advantage of the most amazing platform for rare disease awareness, the streets of New York City, and I look forward to updating you as the race progresses! Our virtual race registration is now open, so hop on over to our website and sign up! Thank you for supporting us, for supporting NORD, and for loving on the rare disease community. Happy running, friends!

AND NOW, INTRODUCING SOME OF THE

RUNNING FOR RARE TEAM:


MARISSA SCHLEMMER

"Growing up, a lot of my time was spent with my parents between doctors' offices and physical therapy. I will forever be grateful for everything that they sacrificed for me. At the age of five, I was diagnosed with Juvenile Rheumatoid Arthritis and at seven, I was diagnosed with Reflex Sympathetic Dystrophy- a rare chronic pain disorder. Throughout the years, I befriended countless others with a variety of diagnoses through patient organizations, charity events, and waiting rooms. Our friendships changed the way I perceive the world and everyone I encounter. Although the conditions have come with struggles, they have also shaped who I am today. Earlier this year, I became a member of the NORD Research Team and immediately reached out about Running for Rare. I am so grateful to have been selected for the 2019 team. This will be my second marathon, but my first NYC marathon!"



ERIK HARDIN

"I live in Greenwood Village, Colorado with my wife Lisa, daughter Addison, and our two dogs Gracie and Bear. I grew up outside of Atlanta, Georgia and moved to Colorado just about 20 years ago. Upon moving to Castle Rock, Colorado, I fell in love with the outdoors and the active lifestyle that Colorado embraces. Running became a passion 5 years ago, and I have been drawn towards road races, endurance challenges, and pushing my own physical and mental limits through running. In partnering with NORD, my goal is to assist in raising funds and awareness for a tremendous cause, but also support my oldest and closest friend's family and their daughter who was recently diagnosed with Cystinosis, a rare disorder."



GABRIELLE MONACO

"Those close to me know that I was diagnosed 13 years ago with a rare autoimmune disease while attending graduate school. For the last 2 1/2 years, I have spent countless hours with specialists, in the hospital, and have undergone two surgeries to help combat the effects of my disease. This will be my first NYC Marathon without a thyroid and 80% less of my stomach. My next step in the fight against rare will be in February when a newly FDA approved medication, the first ever to treat Graves Eye Disease, will be available to patients. I will undergo six weeks of one-hour weekly infusions to correct the eye bulging caused by the disease. This medication is thanks to the “Orphan Drug Act” that allowed for research and breakthroughs for rare diseases. This is why Running for Rare and coming back for my third NYC Marathon is so important to me!"



ALLISON WORTMAN

"One year ago, we lost my incredible father from complications due to a rare disease: Histiocytosis. He had been diagnosed only 3 months prior and was relieved to finally get a clear diagnosis after two years of stays at multiple hospitals and major surgeries. He was looking forward to finally moving forward with treatment, but unfortunately, we learned it was too late. When my dad died, my world crumbled. He taught me how to live and love, and pushed me more than anyone else. He was the most selfless person I knew, and we miss him more and more every day. That’s why I’m honored to be running as a member of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Diseases (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services.The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH). Speaking from my experience, the support of the NORD can make all the difference to a family like mine impacted by a rare disease with nowhere else to turn."

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