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team gla runners

A Marathon Accomplishment by Team GLA Runners

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.”

RACE HIGHLIGHTS

Team GLA Pre-Race Dinner
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Interested in joining Team GLA? There are a variety of events you can pursue. Contact events@GLA.org for an opportunity near you.

marathon_jesse ruben

Five Warriors Tackle the Ultimate Road Race for Lyme

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.

Team Dinner_NYC Marathon 2018
Team GLA gathers for pre-marathon dinner: Dan Gautreau, Jesse Ruben, Thor Kirleis, Annie Cunningham, and Nani Luculescu.

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 cunningham

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 kirleisThor 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 LUCULESCUNani 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 gautreauDan 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.

gla greenwich gala

GLA Greenwich Gala 2018: Highlights

Global Lyme Alliance honored Lyme disease patients and researchers at its annual Greenwich Gala on Saturday, May 12 at the Hyatt Regency Greenwich. The event supports GLA’s mission to conquer Lyme and other tick-borne diseases through research, education and awareness. The Gala was preceded by GLA’s Research Symposium.

Gretchen Carlson, TV journalist, female empowerment advocate and chair of The Miss America Organization, served as the emcee of the Gala. In her opening remarks, Carlson, a Lyme disease survivor, said the event would not only focus on “this amazing organization” dedicated to advancing research and education, but on the “power of women.” She noted that the three mothers serving as co-chairs were “successful and resilient moms, strong in spirit and conviction.” All three have been caregivers and supporters of daughters who have suffered and continue to battle Lyme disease.

Carlson was soon followed by Scott Santarella, GLA’s CEO, who introduced Nicole Baumgarth, D.V.M., Ph.D., Professor of Immunology at the Department of Pathology, Microbiology & Immunology and the Center for Comparative Medicine, University of California, Davis. A GLA grantee, Dr. Baumgarth received the Lauren F. Brooks Hope Award for being among the first to document immunologic failures on multiple levels in Lyme disease. In accepting the award, she said: “We are all here to no longer have to be here…to find a cure and, even better, to find a mechanism to prevent this disease so none of us have to think about how this horrible disease is affecting our loved ones.”

Gala supporters were treated to a live performance by singer/songwriter Jesse Ruben, whose mother, Janet Ruben, presented him with GLA’s Star Light Award for his ongoing Lyme disease outreach efforts. In one of the more emotional speeches of the night, she admitted that initially she had trouble believing her son’s Lyme diagnosis. “I didn’t listen when he told me he was suffering,” she said. “I let what I thought was going on to color the truth.” Happily, Janet learned more about Lyme and their family was able to provide Jesse with the support that contributed to his healing. But she appealed to those in the audience, saying “those of you with people in your lives who are suffering with Lyme…please…listen to them. Hear them. Support them any way that you can. They need you.”

Among the honored guests attending the Gala were U.S. Senator Richard Blumenthal; stage, screen and television actor Victor Slezak; broadcast anchor and producer Mike Schneider; investigative journalist Mary Beth Pfeiffer; UFC lightweight fighter Jim Miller and singer/songwriter Marina Morgan. Gala Event Chairs were Westport’s Stephanie Ercegovic with daughters Adriana & Eloise, Greenwich’s Sonya Rolin with daughter Tatiana Donald, and Greenwich’s Astrid Womble with daughter Christina Womble.

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You’re Not Alone Anymore

by Jesse Ruben
#MyLymeLife

My battle with Lyme Disease was easily the most difficult experience of my life. A journey that lasted almost 3 years, that included more than 15 doctors, several incorrect diagnoses, and countless days where I wanted to give up. One of the worst parts of my illness, besides my symptoms, was my loss of identity. I am a singer/songwriter. I love my job, and everything that comes with it. The traveling, the writing, the performances, and especially interacting with audience members. So much of my life was wrapped up in my job. When I got sick, all of it was taken away. Are you still a writer when you haven’t written anything in years? Are you still a singer if you never sing? I was scared that my illness would take away what made me unique, and what made me proud of myself.

Sometimes, I write songs because I want to, and sometimes, I write because I have to. Some songs I write hoping that millions of people will hear them and love them. Some I write just for me, to help me deal with whatever is going on in my life. I wrote “You’re Not Alone Anymore” to process what it was like for me during the height of my illness. The loneliness, the self-doubt, and fear. Fear of not getting better, fear of not being heard or understood. I never intended for anyone to hear it. Until my girlfriend and I were invited to Something Inside So Strong, a Lyme disease conference held at The Royal Theatre Carre in Amsterdam. We were interviewed about what it is like to be a couple where one person has Lyme and the other doesn’t. She shared about having to give up the idea that she could be my whole support system, because she knew I needed other people with Lyme to help me through that process.

WORLD PREMIERE 'YOU'RE NOT ALONE ANYMORE' | Singer songwriter Jesse Ruben: ‘This is a song that I started writing when I was at the worst of my symptoms and that I finished when I got better. I have never played it for an audience, because I never felt like anybody would get it.’ I'm so grateful Jesse, for your heart warming performance at Something Inside So Strong, the Lyme event in Amsterdam.

Posted by Fred Verdult on Sunday, July 2, 2017

 

When it came time for me to perform, I decided at the last second, in a room full of 800 people with Lyme disease, to perform “You’re Not Alone Anymore“. I could tell from the audience reaction that it was the right thing to do. Since the performance of the song was posted online a few days ago, the song has been shared more than 500 times and viewed over 24,000 times. It just shows you how big this community is, and how many people are suffering.

I hope the song gives people hope. I know how hard the process of dealing with Lyme can be.


Opinions expressed by contributors are their own.

Jesse Ruben is a singer/songwriter. Learn more about Jesse’s music, his battle with Lyme and his inspiring “We Can Project” here.

From Lyme to the NYC Marathon’s Finish Line

Running a marathon of 26.2 miles is a herculean effort even for most healthy people. But for those who suffer a chronic health issue, like Lyme disease, it requires determination and drive that most of us couldn’t even imagine.

 

On November 6, 2016, Toni Blanchard, of Greenwich, CT and Jesse Ruben, of New York, both members of Global Lyme Alliance’s Young Leaders Council, became the first Lyme patients to run the New York City Marathon for Lyme disease research. Wearing GLA T-shirts created especially for the race, Toni and Jesse ran to spread awareness about Lyme disease and the need to raise funds for further research. They set up a Crowdrise account and, together, raised over $15,000 for GLA.

Crossing the finish line was a dramatic achievement for both runners. Recently we caught up with them to talk about their success. We hope it will inspire those working their way back to health.

Can you tell us about your experience with Lyme disease?

JR: I started feeling ill at the end of 2012 and was diagnosed in September 2013. During the time when I didn’t know what was causing my symptoms, I was dizzy, nauseous, had brain fog, crawling sensations in my body. At one point I couldn’t even walk up a flight of stairs. I was a mess. After I was diagnosed, I went through nearly two years of treatment. My symptoms slowly lifted and I felt like I became a human being again.

TB:  I was diagnosed when I was six so I never knew what feeling “normal” meant. I had terrible body pains when I was young and my feet would hurt to walk. I experienced exhaustion and tremendous difficulty sleeping, but this was all normal for me, so growing up I never understood that I was compromised. Since I was young, running and exercise in general have been important elements in my recovery.

What made you decide to run in the marathon?

toni jesse lyme marathon ylcJR: The first thing I wanted to do after my recovery was run the New York City Marathon for Lyme research. At first I was told I couldn’t: no Lyme-related charities were registered. Luckily, I had gotten a spot in the marathon lottery. Once Toni and I discovered we both had spots in the race, we decided to set up the Crowdrise account so that people could donate to GLA on our behalf. It was an opportunity to be a voice for people who couldn’t run the race and to raise funds for the organization.

TB: I always wanted to run the marathon. Running has been a huge part of my health regimen. It allows me to detoxify my body and clear my head. The marathon was an opportunity to run for GLA, for the Lyme cause and for all Lyme sufferers, especially the kids.

Did having Lyme affect your training?

TB: I did a half marathon in April, but I didn’t start intense training until August. At the end of September, I did a 20-mile run in Greenwich and then I had to take a week off. My body wasn’t able to handle the intense training and from then on the longest I ran was 12 miles.  I questioned whether I could do the marathon, but I had already raised money for GLA and I didn’t want to let down all who had donated, so I decided I would walk to the end if that became necessary.

JR: My energy level and muscle recovery were affected. I did a 20 mile run about a month before the marathon. I noticed my body didn’t bounce back as quickly as it did before I got Lyme disease. I had to give myself an extra day to rest after my runs.

What was it like to run in the race?

jesse running nyc marathon lymeTB:  I was having trouble breathing and became quickly dehydrated. By mile 18, I was breaking down and I didn’t know how I’d be able to finish. It came down to my doing a run-walk and just putting one foot in front of the other. I was really dehydrated and nearly collapsed at the finish line. I then had to spend over an hour recovering in the medical tent. I finished in 4 hours, 12 minutes, but I expected to run it faster.

JR: I got a stomach flu the day before the marathon. That morning I had to ask myself, “okay, is this going to happen today?” I decided I would do the race, but I would run slowly and steadily. Instead of trying to break a record, I ran very, very slowly and finished in 5 hours, 11 minutes. The experience was emotional for me. At mile 22 or 23, I began to think “I want this to be over,” but I then thought about all the doctor appointments, IVs and what I went through to get to the race and I tried to stay in the present.

What was the best part for you?

toni blanchard nyc marathonTB:  It was great wearing the GLA T-shirts that were created for the race—they really stood out.  I was amazed to hear so many people along the path yelling out to me about their experience with Lyme. I also was so touched at the start when we were all gathered at the Verrazano Bridge. It’s such an international event and listening to all the different languages was amazing. Plus the support of everyone, especially little kids, along the route was great.

JR: It was a four-year journey between the last marathon I was able to run and this one—so it was very meaningful for me.  Representing the Lyme community was also very special. A lot of people at the event talked with me about Lyme.  Everyone knows someone with the disease. 

Would you do it again?

toni blanchard post marathonTB: It’s something I’m thinking about. It’s given me a lot of confidence going forward. It’s an opportunity to spread the word and raise awareness. It can be difficult to imagine getting better, but I want to give people hope and show those who are suffering that it will be okay and they can overcome.

JR: I am going to do it the next year, the next year and the next year. I can’t wait. But I’m not just running for me. Thousands of people are suffering from this disease and feel like there’s no hope. I want to show people with Lyme there is something besides the anxiety and fear that they feel day after day. I hope we have given people hope for their own recovery.