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tough mudder

Tough Mudder and Lyme Disease

by Scott Santarella, CEO, Global Lyme Alliance

I have always been intrigued by the endurance event concept and its connection to charity fundraising. More specifically, I have been a huge fan of Tough Mudder, which is surprising because I hate being dirty, especially hate being wet and muddy, and I abhor running.

 

So I am not sure what I was thinking when I decided to Captain the Global Lyme Alliance Tough Mudder Team. I certainly wasn’t expecting the impact it would have on me personally and I definitely did not predict the perspective it would give me about facing challenges and understanding, even if only slightly, what Lyme patients deal with every day and why we need to eradicate this disease.

The primary reason for my taking on the challenge of Tough Mudder was to support tens of thousands of patients who struggle each day with the insidiousness of Lyme disease, as well as to raise funds and public awareness of GLA’s efforts to eradicate Lyme. And, as an added bonus, it was the perfect excuse to get myself in shape.

So for three months, as Captain of Team GLA, I trained hard, proud of my own determination and initiative. But I was locked in an internal battle, too.  At times I felt powerful. At times I felt weak. There were days when I questioned whether I had the capacity to take on this endurance challenge, and days when I envisioned myself crossing a finish line in triumph.  There were also days when I didn’t think I could train for another minute. All thoughts and feelings I have heard Lyme patients share in their stories: being too weak to get out bed; today is a good day; today is a bad day; I can’t think straight because of my brain fog; my mind is working today; I feel achy and sore; today my body feels normal, and so on. The ying and yang of Lyme disease is endless. Probably the biggest injustice, in my mind, was I had a huge advantage as I could train for my challenge. With lyme disease patients, there’s no training or coaching, and in many cases there is no warning. Nothing can prepare one for Lyme disease and the battles one will face.

Team GLA in action at Tough Mudder in Bethpage, NY

What I learned about participating in a Tough Mudder is that the muddy, twisting, hilly, wet, challenging, obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits. And although I would be challenged for only a few hours, it was a tiny reflection of the challenge Lyme patients must deal with every day of their lives. The path from getting diagnosed and treated to long-standing remission can seem unbelievably long and winding. Doubts and fears that one will never be well again creep in—just as I worried I wouldn’t have the stamina to complete Tough Mudder. So like Lyme warriors do every day, I was was even more determined to test my strength, stamina and grit, if only for a few hours. A small symbolic gesture on my part to mark and publicize Lyme patients’ considerable suffering.

I was lucky. I ran with a team of people, all of whom watched out for one another, especially me as a 50+ year-old who was running, climbing, jumping, and sloshing about with 20 and 30 somethings. They constantly checked on me, made sure I was okay, and waited for me at each obstacle so I would not have to undergo that particularly grueling challenge alone. I was not the slowest, but I knew I was going to need their help all along the way. Unfortunately, for many Lyme patients, they don’t have a team to help them through the often mysterious stages of their journey and that saddened me. For many Lyme patients, they face their challenges all alone, which angers me. Yet, it also inspires me to work harder on their behalf.

Team GLA finished the race, in fact, the team, waited for me before crossing the finish line as I was bringing up the rear. They wanted all of us to cross the finish line together. It was a wonderful, touching moment and I was reminded that the team that is the essence of GLA—our staff, board, researchers, and donors, our patients and their caring families—we are all in this together. It is only through our collective efforts that we can achieve our goals. It is my hope that in achieving our goals we all cross the eradication of Lyme disease finish line together, some day very soon.

 

 

 

 

 

#teamgla

One Family’s Motivation to Raise Awareness About Lyme Disease

by Global Lyme Alliance
#TeamGLA

Team Gottlieb is running on #TeamGLA in the Tough Mudder for their Mom

Kathie Gottlieb has always loved the outdoors and spent as much time as possible hiking, gardening and riding horses near her New York State home.

So when she started feeling tired and not her usual active, energetic self, she knew something was terribly wrong. She went to numerous doctors searching for answers but, invariably, she was declared “fine” or “stressed” and given an antidepressant since she was “a woman of a certain age,” as she recalls.

When she started feeling tired & not her usual, active, energetic self, she knew something was terribly wrong.

In 2010, after three and a half years of suffering, she was finally diagnosed with Lyme disease. By then she was experiencing fatigue and weakness so pervasive that she was bedridden and had to resign from her job as a language teacher. In the years since she has been able to return to work, but only one and half years before symptoms forced her departure again. (Kathlie Gottlieb, pictured left)

Today she lives with a host of debilitating problems—cognitive defects, significant sleep disruption, overwhelming fatigue, migrating muscle and joint pain, brain fog, tinnitus, neuropathy, digestive issues, plus light and sound sensitivity. As a result, Kathie is unable to attend most family gatherings or other social events—something that deeply pains her and her family.

Lyme really sucks…I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has…

On July 23, Kathie’s three children & her son’s girlfriend will be supporting their mom and Global Lyme Alliance (GLA) by taking on the Tough Mudder Half Long Island Challenge to raise funds for Lyme and tick-borne disease research and education. The Tough Mudder event is a five-mile mud obstacle course challenge that will take place at Old Bethpage Restoration Village in Old Bethpage, NY.

Lyme really sucks,” says Kathie’s daughter, Victoria. “It’s not something to be dismissed as not dangerous to a person’s health. I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has, along with the family members who are affected in their own way.” (pictured left, Victoria & Kathie Gottlieb)

 

The Gottlieb family (Team Gottlieb) chose to partner with GLA, the leading nonprofit dedicated to conquering Lyme and tick-borne disease through research and education, because “we wanted to support an organization that understands what our family has dealt with for so long now,” said Victoria, “and to support a cause that hits so close to home.” (pictured right, Team Gottlieb: Nick, Victoria, Julian, and Nici)

Why GLA chose Tough Mudder as an official charity partner

While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.

“We feel there’s a special connection between GLA and Tough Mudder because the mud obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits,” said Scott Santarella, GLA’s CEO. “While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.”

Santarella, who serves as Captain of Team GLA, said that individuals can bring awareness to the challenges of Lyme disease by participating in the event. “We also hope to raise significant funds to invest in innovative scientific research and results driven efforts for the benefits of Lyme disease patients and their families,” he said. Since 329,000 people are affected with Lyme disease annually, Team GLA hopes the July 23 event will raise $32,900 for Lyme disease research & initiatives. (Pictured left, Scott Santarella)

To learn more about GLA’s Tough Mudder event or how you can donate, click here.

 

 

Why I’m Getting Dirty for Lyme Disease

by Scott Santarella, CEO, Global Lyme Alliance
pictured here with GLA teammate, Lindsy Brophy

I need your support for Team GLA and Tough Mudder

 

On Sunday, July 23rd I will Captain the Global Lyme Alliance Tough Mudder team in Bethpage, Long Island, raising funds and awareness to support GLA’s efforts to eradicate Lyme disease. Part of my incentive to take on the challenge of the Tough Mudder was to support the tens of thousands of patients who struggle each day dealing with the insidiousness of Lyme disease, and as an excuse for me to get my you-know-what into shape!

Getting Ready

I went so far as to exercise on LIVE TV!  That alone should tell you how important this is to me. If you want a laugh, check me out on this Good Day New York segment promoting GLA and our team. 

How You Can Help

You’ve witnessed me crawl, jump, and try to catch my breath – now it’s your turn to help.

  • To make a donation to support me and Team GLA, CLICK HERE.
  • To be part of the fun by joining Team GLA or participate in a Tough Mudder anywhere in the county on behalf of GLA, CLICK HERE.

Thank you all in advance for your consideration of support and I will report back on how sore I am with photos of me full of mud on July 24th!

Scott Santarella