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.
Five runners gave new meaning to the term “Lyme warrior” on Sunday, November 4, 2018, as they completed in the largest marathon in the world—the TCS New York City Marathon.
Representing Global Lyme Alliance’s first team entry as an official charity partner in the marathon—and the first for any Lyme organization—were Jesse Ruben (team captain, pictured above), Annie Cunningham, Thor Kirleis, Nani Luculescu, and Dan Gautreau. These amazing warriors not only entered, trained for, competed in and finished the 26.2-mile race; while doing so they raised more than $21,000 to support GLA’s mission, and ultimately, help patients.
Jesse, Annie, Thor, Nani, Dan, and Annie each have a personal Lyme story.
Jesse, who personally suffered from Lyme’s devastating symptoms, runs the marathon in part to prove that he can. “If you had told me a couple of years ago that I’d be training for the marathon, there’s no way I would’ve believed you. I was spending most of my time in bed. My fatigue was unbearable.” I was fortunate enough to find a treatment that was effective and to be in remission— and that’s a miracle.”
Annie spent two years fighting the effects of Lyme. She is determined to spread awareness about the threat of Lyme to friends, family and “anyone who will listen.” Her goal in running the marathon was “simply to finish and to maintain my health all while raising awareness and funds for an amazing and vital organization!”
Thor has been fighting Lyme for the past six years. He has run over 110 marathons in his 30 years of running, but Lyme nearly ended all that— to put it mildly. Since contracting Lyme disease (and several co-infections), he has gone on stretches where he could not run even one full stride. He constitutes an example to us all, as does entire Team GLA, about what it means to overcome adversity.
Nani ran in memory of her father who lost his battle with Lyme-induced ALS in 2013. Running with Team GLA to raise money and awareness for Lyme was especially important to her. It was, in fact, one of her dad’s final wishes before he died. She says, “for me to tell others about Lyme so they wouldn’t have to suffer as he did.”
Dan was diagnosed with Lyme disease when he was 21. “While my symptoms have subsided in recent years,” he said, “there is so much to be done to lessen the impact on those affected.” His hope was that by running on behalf of GLA, he could fundraise and spread awareness to combat Lyme and other tick-borne diseases. Among all the team members, Dan’s time was the fastest, 3:30:58.
Please join GLA in giving these five amazing warriors a marathon size thank you for their tremendous achievement. To show your support, donate to Team GLA today.
Global Lyme Alliance is thrilled to be the first Lyme organization named an official charity partner of the TCS New York City Marathon, starting with the 2018 race. The TCS New York City Marathon provides a dynamic platform for GLA to raise funds and increase public awareness about the escalating risks of Lyme disease.
We are excited to announce the carefully selected inaugural team of 5 Lyme warriors who will represent Team GLA on Sunday, November 4, 2018. Please join us in supporting and celebrating our runners throughout their memorable journey to the iconic finish line.
Jesse Ruben, Brooklyn, NY
Singer/Songwriter, 3X Marathon runner on behalf of GLA and Team GLA Team Captain
Why I run: I run to prove to myself that I can. But I also run to represent the huge number of people with Lyme who are still dealing with their symptoms. I feel a huge responsibility to do whatever I can to help the people in this community. Part of that means spreading awareness and raising money. The marathon is a perfect way to do that.
If you had told me a couple of years ago that I’d be training for a marathon, there’s no way I would’ve believed you. I was spending most of my time in bed. My fatigue was unbearable. The fact that I was fortunate enough to find a treatment that was effective, and to be in remission, is a miracle. I am so honored to be the team captain, but even more than that, I am just so excited that we finally have an official team. Two years ago, it was me and one other person, last year it was only me. There are some marathon charity teams that have hundreds of members that raise millions of dollars every year. I see no reason why the Lyme community shouldn’t have that as well. To me, this is just the beginning. I can’t wait to see what happens in the upcoming years. It’s very exciting.
Cell Culture Scientist, Certified Yoga Instructor, wife and dog mom who loves spending time in the mountains
Why I run: Diagnosed in 2016 & spent two years fighting for my health, spreading awareness to friends, family and anyone who will listen!
I run because it just feels good for both my body and my mind. I don’t need any fancy gear and can just step outside my front door. I am looking forward to being a part of a team for a cause that I care deeply about and to participate in such an electrifying city like NYC! My goal is to simply finish and to maintain my health all while raising awareness and funds for an amazing and paramount organization! I am honored to be representing the Lyme community and I now understand the power of representing something bigger than myself.
Senior Software Engineer, dad, husband and 110-time marathon runner
Why I run: I run with Team GLA so that I can help raise funds and retain a part of my identity by refusing to let Lyme dictate what I can or can’t enjoy.
I have been fighting Lyme for the last 6 years. To say it is my cause is an understatement. I live it every day. Although I have run over 110 marathons in my 30 years running, I have been hampered — to put it mildly — over the last 6 years since contracting Lyme disease (with many co-infections). I have gone on stretches where I just cannot run even a step. I run and often walk (due to Lyme) to show Lyme and the world that although you can make me ill, you cannot rob me of my love of running. My goal for the New York City Marathon is to have fun and get as far as I can before they pull me off course. I will likely have tears in my eyes as I cross the 59th Street Bridge as the course traverses back into Manhattan as at that point, with the knowledge that I am doing my part in my battle with Lyme, I am also more than halfway through showing Lyme that it cannot take away my passion that is running and being an athlete and participating in meaningful endurance events.
Why I run: I’m running for Team GLA in memory of my Dad who lost his battle with Lyme-induced ALS in 2013.
I started running to help me cope with the overwhelming grief I felt after losing my dad. I was in a bad place, depressed and feeling lost. Running was a place to be alone with nature and appreciate all the beauty around me and an opportunity for me to meditate and improve my health. I started feeling better and found solace in running so I kept at it. Running with Team GLA to raise money & awareness for Lyme means so much to me since one of my dad’s final wishes before he died was for me to tell others about Lyme so they wouldn’t have to suffer like he did. I am most looking forward to climbing up to the Statue of Liberty crown on my birthday before the race. My goal for this year’s marathon is to enjoy the experience and share my dad’s Lyme story with as many people as possible.
Bank Examiner, recently moved to NY from Washington DC and is running his 2nd marathon
Why I run: I was diagnosed with Lyme disease when I was 21. While my symptoms have subsided in recent years, there is so much to be done to lessen the impact on those affected.
As someone who struggled with Lyme, Team GLA immediately stood out as the perfect fit. My hope is that by running on behalf of GLA, I can raise fundraising and spread awareness to combat Lyme and other tick-borne disease. I believe that supporting GLA is a great way to fight this disease, and to contribute to tangible results. As someone who has been plagued by this horrible and often misunderstood disease, I have been passionate about spreading awareness about Lyme. I run because it keeps me in shape, it gets me outdoors, but most importantly it makes me feel great. My goal is to finish the 2018 NYC Marathon under 3 hours and 15 minutes! I’m most looking forward to the magic of marathon day in the city. There is a special energy among runners and spectators alike, and I’m excited to be a part of it.