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Sep. 9, 2016

TOPIC: Get Involved, Patient Stories

Becoming a Marathon Runner

Posted by Christina Jensen

Written By: Kate Bartlett

“I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving birth to her only daughter, Lily. My co-worker Gia and I discussed the opportunity to sign up to run on behalf of the Running for Rare team…After having a few discussions with Phil Maderia, I was convinced I could do this and all for a great cause.” 


Kate Bartlett, NYC Half Marathon 2012

Kate Bartlett, NYC Half Marathon 2012

Hey all! First of all, thank you for taking the time to give me a few minutes of your time to discuss my marathon training and my Community Partner, Tara Notrica. My name is Kaitlin Bartlett, I’m 29 years old and grew up in Syracuse, NY. Syracuse is home to the Orange, the brutal winters, and the best place to witness fall foliage! My running journey began in the Spring of 2011 when my now fiancé convinced me to sign up for the Mountain Goat run(10 miles) in Syracuse. I told him he was crazy and he’d never get me to run the whole thing. Believe me when I tell you, I hated running. I couldn’t believe people ran for fun. I complained about the heat, the distance and anything you could think of when we’d go out for our training runs. Just ask him, I was not the most positive person to be around. (Thank goodness he still wants to marry me!) At this time, all I could connect running to was high school soccer practice when we’d run 3 miles BEFORE practice even started. I was very bitter about it.

Flash forward to Spring 2012 when I signed up for my first half marathon in New York City. I entered the lottery, not expecting to get chosen, but as luck would have it, I was accepted! I finished my first half marathon in 2 hours and 6 minutes and have a lifetime of memories running through Central Park, Times Square, the Westside Highway and Battery Park. To date, I’ve completed two NYC Half Marathons and they get better year after year.

At this point, I was addicted to running. Is this the feeling people craved? Is this what a runners high felt like? I couldn’t believe I was turning into one of those people who loved running for fun. The sense of accomplishment you feel when crossing the finish line is something I crave every time my feet hit the pavement. It’s amazing what setting a few goals and reaching those goals can do to you. Although, I have to admit, I almost lost the willingness to run another half marathon after the recent Syracuse Half Marathon in April 2016. The race conditions were unlike any I’ve ever faced before. If you’re not familiar with the Syracuse weather, it’s possible it will snow until Mother’s Day! On Sunday April 3rd, I woke up to those very same conditions: a white out, 24 degrees, 35 mile per hour winds and a windchill that made it feel like 8 degrees outside. The snow whipped sideways across the course, and about 40 minutes into the race, the snow thickened to a full-on white out. Then, around mile 4 it started to hail. Road conditions were covered in snow and ice and after several attempts of saving myself from eating the pavement, I swore I would never run again. That was it. I was done.

 

In May 2016, I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving birth to her only daughter, Lily. My co-worker Gia and I discussed the opportunity to sign up to run on behalf of the Running for Rare team. I had flashbacks of the Syracuse Half Marathon and the possibility of snow in NYC in November and said NO way. I’ve finished every half marathon I’ve ran and said to myself, “there is no way I could turn around and do this again and complete a full marathon.” I decided to fill out the form and throw my name in the hat because that’s who I am. After having a few discussions with Phil Maderia, I was convinced I could do this and all for a great cause. I signed up for the marathon training program with our local Fleet Feet store and started training at the end of June.

In the meantime, I was connected with my Community Partner, Tara Notrica, who I’d be running the NYC Marathon on behalf of. Let me tell you, Tara is a blessing.

Tara Notrica, Running for Rare Community Partner

Tara Notrica, Running for Rare Community Partner

Tara has participated in the Community Partner program for the past 3 years and has watched it grown tremendously. Tara is married to Barry, and has 2 children, Jared (16) and Samantha (12) and lives right outside of New York City. Tara has been battling Mast Cell Disease for 10 years, also known as the Nasty Masties by patients. It has completely altered her life. Tara’s health journey began in her early 20s when she would have yearly episodes of facial swelling, hives, vomiting, and constriction of airways. At that time, doctors thought she was having severe allergic reactions and would prescribe over the counter medication. Countless visits to doctors and specialists over the next five years would result in diagnoses of alopecia, lupus, rheumatoid arthritis, Lyme disease, and other autoimmune disorders. However, as treatments for each of these were unsuccessful, Tara and her family couldn’t help but feel hopeless. Her condition was not improving; she was loosing muscle mass, and at one point weighed less than 100 pounds. On April 1, 2011, Tara was finally diagnosed correctly with a disease in which she suffered from every symptom. That disease – mast cell activation disorder is a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells are “master regulators” of the immune system. They come from bone marrow and go into all tissues of the body. She had a stem cell transplant using her own cells in July 2015 and unfortunately, it failed. She is back on a targeted form of chemo and is convincing her doctors for a bone marrow transplant.

For the last 5 years, Tara has worked tirelessly on passing a NYS piece of legislation related to the provision of school bus transportation for children of sick parents or guardians. This has been her focus this year and unfortunately it did not pass in mid-June. Tara will continue to push forward and use her voice in hopes that some day this bill get passed and signed into law. Tara has a beautiful soul and an infectious personality. She remains positive in light of her disease and I am so happy our paths crossed! I can’t wait to cross the finish line on November 6th and give Tara a huge hug!

I will continue to update on marathon training but as of this morning, I completed a 12 mile run with the Fleet Feet team and have a 14 mile run next Sunday! Enjoy the rest of your Sunday, everyone. To donate to the Running for Rare team, visit my fundraising page.


This blog post was originally shared on the Running for Rare website by Kate Bartlett, a member of the Running for Rare team. To read more stories about the runners and Rare Community Partners participating in Running for Rare, NORD’s charity marathon team, follow the team on Facebook and Twitter and visit this page on our website.

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