Why run 26.2 miles through the streets of New York City? Team GLA captain Jesse Ruben’s shirt says it best … “For those who can’t.”
A huge thank you to all five Team GLA runners in the 2019 TCS New York City Marathon, including captain Jesse Ruben, Erin Conant, William Egan, Mia Sapienza, and Taryn Tomczyk. Your dedication and commitment to not only training for and running the grueling NYC Marathon, but also raising awareness and funds to support Lyme patients everywhere and GLA’s mission is incredible and inspiring. Thank you!
Here are a few pics of this amazing team:
Team captain Jesse Ruben interviewed by CBS 2 New York (at 1:30):
Click here to learn more about the 2019 marathon team.
Click here to donate and support GLA’s mission to conquer Lyme disease and other tick-borne illnesses.
Special thanks to our #BeTickAWARE sponsor Ranger Ready for their support of #TeamGLA!
Meet the Team GLA runners for the 2019 TCS New York City Marathon. All 5 have personal reasons for taking on the 26.2 mile run through the streets of New York City.
If you ask Taryn Tomczyk, from Scranton, Pennsylvania, but now living in New York City, who’s the strongest person she knows, she’ll tell you without missing a beat that it’s her mom, Sue, a chronic Lyme disease sufferer.
Sue was officially diagnosed with Lyme about nine years ago, but she was feeling ill for years before that. Unfortunately, as is too often the case, Sue’s doctors never thought to test her for Lyme until it was too late. She has since tried numerous treatments and dietary plans to get the disease under control, but nothing has been effective. She struggles with Lyme on a daily basis—some days she’s so fatigued she can’t get out of bed, on others she has trouble walking due to excruciatingly painful joints.
In support of her mother and others affected by Lyme disease, on Sunday, November 3 Taryn will join 50,000 individuals from across the globe who will gather on Staten Island to run the 2019 TCS New York City Marathon. Taryn will run as a member of Global Lyme Alliance’s (GLA) official charity partner team.
“I want to be able to help raise awareness as well as donate to Lyme research efforts, so that fewer people will suffer and those that do will be treated sooner,” Taryn said. “It means the world to my family and me to contribute to a cause that hits very close to home.”
Joining Taryn as members of Team GLA will be Erin Conant, of Milford, Massachusetts; William Egan, raised in Maryland, but now living in New York City; Mia Sapienza, of New York, and Philadelphia-born Jesse Ruben, who will serve as Team GLA’s captain for the second year in a row. Although each has a different personal reason for running the grueling 26,2 mile course, all want to help raise funds for GLA and make a difference in the fight against Lyme disease.
Erin Conant, a mother of a seven-year-old, says she is “honored” to run in the Marathon for “a cause that’s meaningful and valuable to myself and my family, that is, raising funds to support ongoing Lyme research.” Four years ago she learned first hand how difficult it is to get an accurate Lyme disease diagnosis. She became quite ill with pneumonia and landed in the ER. Yet after a course of antibiotics and steroids and a month of rest she still hadn’t returned to normal. She went back to her doctor for a battery of tests and learned she had been suffering from previously undetected and untreated Lyme. She still experiences varied levels of fatigue and fevers almost daily, but that isn’t stopping her from running despite her personal struggles.
“Running the New York City Marathon is certainly a bucket list item,” she said. “But mostly I want to run to support the development of effective treatments, prevention education and ultimately a cure. It holds a special place in my heart.”
After college in Utah, William Egan moved to New York and is now looking forward to tackling his first New York City Marathon. His main goal on race day, he says, is to show others that it’s possible to overcome life’s obstacles. His Lyme journey began a year ago when he took his daughter on a father-daughter campout in New Jersey. At the end of each day, he checked them both carefully for ticks. Yet less than three weeks later, while vacationing in Florida with his family and in-laws, he started to feel symptoms that he initially dismissed as sun poisoning from being onboard a boat all day. Almost overnight, he started to feel extremely fatigued, and suffered from migraines, light sensitivity, intense night sweats and brain fog. He then spotted a large “softball sized” ring on his upper inner thigh, a tell-tale sign of Lyme disease. He had missed a tick from the campout.
Egan, who works for the investment banking firm Morgan Stanley, returned to New York, saw his general practitioner, and began medication to treat Lyme disease. Three weeks later, he learned he had also been infected with the co-infection babesiosis. In the next few months, his symptoms continued unabated. “I had completed a Half Iron Man a month before the campout with my daughter, and now I couldn’t even bike 20 blocks to my office,” he said. “I went to bed around eight o’clock every night and still woke up exhausted. I had migraines that shut me off from my family and work because I couldn’t even keep my eyes open.”
Grateful that he is feeling better today, Egan is determined to raise awareness about Lyme prevention—and one way is by being on Team GLA. He and his three children are excited about his running in the marathon. “My seven-year-old is also very excited about a series of bake sales/lemonade stands for my marathon fundraising and to remind New Yorkers to check for ticks during their adventures.”
This will be New Yorker Mia Sapienza’s second marathon—her first was in 2017 and she hopes to finish strong. Her friendship with Team Captain Jesse Ruben and his wife, Jen, inspired her to run and fundraise for Team GLA. “Their love, Jesse’s strength in recovery, and Jen’s support have been inspirational to observe,” says Mia, a Human Relations executive.
Another reason, she says, is that her mom was recovering from Lyme when she was a baby. “My parents were nervous during my mother’s entire pregnancy,” said Mia, “and I grew up hearing about my mom recovering from Lyme with a newborn.”
These reasons have motivated Mia to run for GLA. “I believe in the cause and have witnessed recovery,” she said. “I know how many people suffer still, all over the world.”
Philadelphia-born singer-songwriter Jesse Ruben, now living in Brooklyn, has run the New York City Marathon five times, three times for GLA. For the second year in a row he will run as GLA’s Team Captain.
When he performs at concerts, Jesse makes it his mission to raise Lyme disease awareness. He says no matter where he goes, there is always someone who has Lyme—audience members at concerts, Uber drivers, people waiting in line behind him at the bank. “There is still a long way to go. So I’m going do everything I can to help Lyme patients.”
He says he is proud to run the marathon again. “As Captain of the GLA marathon team,” he says, “I feel honored to be representing this community and running for all of those people who are suffering and who can’t run themselves.”
Completing the TCS New York City Marathon, all 26.2 miles of it, is an amazing feat for anyone, let alone for those who suffer from Lyme. Yet last month, five Lyme warriors did exactly that, running that grueling course to help raise funds for Global Lyme Alliance (GLA).
Recently we caught up with the five members of GLA’s first official charity partnership team— Annie Cunningham of Denver, Colorado, Thor Kirleis of North Reading, Massachusetts, Nani Luculescu of Los Alamitos, California, Dan Gautreau, of Brooklyn, NY, and Team Captain Jesse Ruben, also of Brooklyn. Each teammate has been afflicted by Lyme in one way or another, sadly confirming what we all know about the growing threat of this disease. We asked them to reflect on Team GLA and their marathon experience. Here’s what they had to say.
Dan Gautreau, along with three other team members, has sadly experienced Lyme firsthand. Dan ran an astonishing time of 3:30:58. He found strength in the team’s unity. “Running in the 2018 NYC Marathon on behalf of GLA,” Dan said, “was a truly inspirational experience! I could not be prouder of what we accomplished as a team.” He also admitted to counting on the city’s spectators for those moments when his illness interfered, and his stamina flagged. “The city was thriving with support and energy. It really was an amazing experience.”
Team GLA’s Thor Kirleis followed Dan across the finish line, completing his 114th marathon in 3:37:14. “Beating Lyme is my cause,” said Thor. Through his race, he says, he wanted to show Lyme patients that getting through the day is not always mind over matter. He went into race day hoping that his physical strength would match his mental fortitude but anticipated a Lyme flare up. “I thought I would have to walk the entire course because of how Lyme robbed me of the ability to run,” Thor said. But I was able to cobble together 10 training runs, and on race day Lyme didn’t stand in my way. I went on to have a great race.”
In the weeks since the marathon, Thor is still savoring the experience. “It was so special to me to feel like an athlete again and to have at least one more day of living without the limitations of Lyme. I felt like I was on cloud nine,” he said. He hopes that feeling will last, and on behalf of his teammates, shared that “we all want it to last.” On his long car ride back home to Boston, Thor said: “I came away with renewed motivation to continue to battle this disease.” When asked if he is considering running again in 2019, our Lyme warrior exclaimed, “I will be back. We will all be back.”
Annie Cunningham echoed Thor’s sentiments when asked if she would run consider participating in the marathon again. “Heck yeah,” she said. While running is usually considered an individualized sport, she realized that being a part of Team GLA was quite the opposite. Lyme disease can feel isolating but running with those who have suffered as she has helped her to a 4:50:00 finish. “My teammates understood my struggles and supported me,” she said. While Annie could be seen with a smile on her face throughout the marathon, she faced some adversity at Mile 17 when her feet started to hurt. “Nine [more] miles are a long way to go when your legs begin to cramp. I knew that I could slow down but I didn’t want to stop. I just took it one mile at a time, keeping my head up to enjoy the sights and the cheers from the fans.” Post-race, Annie experienced a unique form of a runner’s high: she felt less inflamed than usual. Although she felt sore, “it’s a good sore,” she assured us. Annie found the race to be physically, mentally, and emotionally beneficial. Like her friend Thor, “I have hope too,” said Team GLA’s top fundraiser.
One team member, Nani Luculescu, experienced a struggle no family member should have to go through. Nani lost her father to Lyme-induced ALS several years ago and ran the marathon in his honor. “I never want anyone to have to suffer the way he did,” she said. While crossing a marathon finish line is something only 1% of people get to do, to Nani it meant knowing she had made a difference. On finishing, she said: “I couldn’t hold back the tears! My dad would be so proud of me for making it to the finish line and raising over $5000 for Global Lyme Alliance all by myself.” After Nani crossed the finish line, she put on her cheerleader hat to applaud the final marathon finishers. “I can’t get enough of this,” she said. “I don’t want it to end!” The 2018 TCS New York City Marathon is the first of many to come for this spirited teammate; Nani plans to run for Team GLA next year. “When can I sign up?” She asked, thanking GLA for “an amazing opportunity.”
As Team Captain Jesse Ruben said: “It was so special for me to represent the Lyme disease community while running through all five boroughs of New York City. What a beautiful, incredible day.” An integral part of Team GLA, Ruben provided support to his teammates after unofficially running the marathon for Global Lyme Alliance in the past. We asked Jesse how he would feel about returning next year. “I am going to do it every year forever,” he said.
Collectively, Team GLA raised over $21,000 to eradicate Lyme and help those who are suffering. Please join with us in congratulating our phenomenal team. Perhaps Jesse said it best: “I hope that running the TCS New York City Marathon shows all those struggling with Lyme that you can get better. You can do it, too.”
Interested in joining Team GLA? There are a variety of events you can pursue. Contact [email protected] for an opportunity near you.