Tag Archives: scott santarella

lyme partnership

Together in Partnership: Giving thanks to an amazing community

With 2018 drawing to a close, I want to take a moment to thank you for being a part of our community. Your generous support—whether in research dollars, program participation, or simply standing in solidarity with us as we move closer to a Lyme-free world—is deeply appreciated.

As the leading 501(c)(3) dedicated to conquering Lyme and tick-borne diseases through research, education and awareness, Global Lyme Alliance seeks to bring us all closer to improved diagnostics, more effective treatments, and a cure. Earlier in the year we announced that we had surpassed the $10 million mark in research grant funding. In 2018 alone, we awarded close to $2 million in research grants to 15 researchers at leading national academic and medical institutions.

We are fortunate to have many talented partners. More than 35 are leading researchers from world-class institutions. For many—Drs. Kim Lewis, Ying Zhang, and John Aucott among them—GLA was the first grant-making organization to invest in their research. Our Scientific Advisory Board, comprised of 16 of the world’s top researchers and clinical innovators, works diligently to guide us toward those studies which have the greatest likelihood of delivering significant, marketable advances.

GLA-funded scientists have achieved many advances this year, including progress in the development of a reliable diagnostic test; identifying potentially new therapeutic drugs, and exploring drug combinations that successfully attack “persister” cells, which successfully evade conventional antibiotic treatment, as well as antibiotic-resistant bacteria.

We have increased tick awareness levels through robust educational initiatives involving physicians, teachers, summer camps, and the general public. And we are particularly proud of our partnership with Ivy Oaks Analytics™ which has worked with GLA to reach more than 125,000 children (and their families) at 150 summer camps in 8 states through our “Be Tick AWARE” Program, the only such program of its kind.

A few highlights from 2018

With Victor Slezak, Mike Schneider, and Mary Beth Pfeiffer at GLA Greenwich Gala 2018
« 2 of 16 »

 

Our thanks, too, to colleagues in the Lyme world—including but not limited to Focus on Lyme, Alex Hudson Lyme Foundation, LivLyme, LymeDisease.org—who are vital associates in our largely collaborative effort to address a baleful threat which puts our vulnerable children at highest risk.

Thanks, too, to our passionate fundraisers, including our major donors, event sponsors, our athletic endurance program participants, Education Ambassadors, our thousands of first-time annual donors, and our celebrity partners who have helped us reach more than 10 million people through strategic outreach efforts. I want to single out our newest partner, The Avril Lavigne Foundation, with whom we will grow out vital outreach efforts. And a special thanks to our hard-working Board of Directors, including our newest members Avril Lavigne, Nancy Del Genio, and Peter Norley.

We hope you are as proud of GLA’s accomplishments as we are. If you haven’t done so already, please take a moment to read about our just launched “Lyme is Real” year-end fundraising and awareness campaign. And remember, a year-end gift is fully tax deductible. Together in partnership, we can keep the momentum going to beat this disease!

Happy Holidays,

 

 

Scott Santarella
CEO
Global Lyme Alliance

REMEMBERING ONE OF OUR OWN

by Scott Santarella, CEO of Global Lyme Alliance

Kasey Passen was driven to help others in the fight against Lyme disease

Some people have dreams about changing people’s lives but, through no fault of their own, never have an opportunity to carry them out. By contrast, Kasey Lynn Passen, 37, filled with love and the power for doing good, was determined to make people aware of the escalating incidence of Lyme disease in Chicago and outlying areas. Her passion stemmed from her own experiences with the disease and her wish to prevent others from going through the suffering she had. “Too many people are unaware of the risks they face,” she said.

Sadly, the disease took her life yesterday, September 4. We at Global Lyme Alliance condole with Kasey’s family and friends on the passing of such a vibrant, creative and loving individual.

Scott Santarella with Kasey Passen at their first Chicago GLA Event: An Evening of Art and Education

I met Kasey a few weeks into my tenure as CEO of Global Lyme Alliance. We discussed her desire to hold an event in Chicago to raise money and awareness for tick-borne diseases. GLA had never done an event in the midwest before, but Kasey made that conversation a reality— first with an “Evening of Art and Education”in March 2017, followed by the highly successful “Sublyme Soirée” fundraiser later that summer.

 

Kasey Passen speaking with co-chair Alex Moresco at the 1st Annual Sublyme Soirée

Thanks to the incredible efforts of Kasey and her fellow committee members, the second annual Sublyme Soirée was held two weeks ago. It was an huge success attended by 300 individuals who enjoyed healthy food (another of Kasey’s passions) while also receiving crucial information about the risk, symptoms and prevention of Lyme disease and other transmitted co-infections.

2nd Annual SubLyme Soirée co-chairs with GLA Staff and special guests, Jesse Ruben and Erin Walker

Kasey once told me she suspected that she had suffered for many years before being accurately diagnosed, but had been told that her full body pains were due to fibromyalgia. Despite this “diagnosis,” she felt progressively worse, suffering from extreme exhaustion, alarming night sweats and cognitive problems such as brain fog and severe headaches. She sought medical help, but with very few Lyme-literate doctors in Chicago, she was only diagnosed about three years ago.

“It took me a long time to find answers to my own health questions,” Kasey said. “My hope is to spread awareness and education of Lyme so that people will be able to recognize the common signs of symptoms and know the right questions to ask their doctors. Lyme is very misunderstood by the medical community and we must advocate to get the right diagnostic tests and treatments.”

Kasey Passen and Family

With the tragic loss of Kasey Passen, GLA finds further motivation to cure Lyme disease and reduce the collective suffering. We can never replace such a zealous and compassionate member of Team GLA, but let’s hope Kasey’s stellar example will be emulated by others with their own tales of Lyme to tell.

 

gla

Video: GLA CEO Scott Santarella’s speech at the 2017 GLA NYC Gala

Scott Santarella’s speech from the gala highlights GLA’s mission and some notable accomplishments in the past 12 months

Good evening. I am Scott Santarella, CEO of the Global Lyme Alliance. It’s an honor to be here tonight with all of you. To those of you who are back once again, thank you for your continued support. For those who are new, welcome to Team GLA.

A year ago, I introduced myself as the new CEO of Global Lyme Alliance and talked about the injustice associated with Lyme disease—the lack of disease awareness, inadequate diagnostics and limited treatment options for patients—all of which, we agree, are completely unacceptable!

I also shared with guests the responsibility we all share to do something when we see inequities in society, especially as it related to underfunded, underserved, and often stigmatized diseases.

And most unequivocally when the health of children and families are at risk, of which, all these, Lyme disease is very much guilty.

As we promised, and thanks in part to your support, GLA has been busy putting our words into action.

Over the last 12 months we have been tackling the injustices associated with Lyme disease with great success and measurable impact, best described by these numbers:

From 2 to 11

The number of countries from which GLA receives donor support, evidence our impact is worldwide.

From 22 to 50

The number of states, yes, all 50, from which GLA receives donations, proof positive Lyme is everywhere.

From a few hundred to 12,000

The number of elementary and secondary school teachers across the U.S. that have been given direct access, free of charge, to our Lyme disease prevention and education curriculum, further evidence of the need to educate nationally.

From 40,000 to 100,000

The number of children and families GLA has helped become tick and Lyme aware through our summer camp program offered at 56 summer camps in seven states and growing.

From $1 million to $2 million

The amount of grant dollars, since January 2017, GLA has committed to scientists focused on researching new ways to combat this disease.

From 2 million to 20 million

The number of media impressions GLA has had over the last 12 months through our social media platforms, educational programming, and awareness outreach efforts.

No doubt, we are all in this together … GLA is just getting started …

Recently, we hired a Chief Scientific Officer, Dr. Tim Sellati, who brings to GLA and our research-based mission 25 plus years experience in Lyme research, extensive disease knowledge and a track record of building bridges among scientists, clinicians, industry and government.

We held a successful fundraising event in Chicago in August which will become an annual event, and we have our sights set on major events in Texas, California, and Florida to further our national impact.

Lastly, we received more than 30 research grant applications this year … an indication of interest among the research community to help us solve the challenge of Lyme disease and reinforcing the need for resources to support their efforts.

This is the moment … now is the time to invest in GLA and our mission!

We have the leadership of our Board of Directors to set the strategic plan.

We have the commitment and dedication of our staff and volunteers to enact change.

And … we are all driven by a passion to erase the injustice for those suffering from Lyme and other tick-borne illnesses.

Together we will shift the paradigm of this disease from uncertainty, misunderstanding, and helplessness … to clarity, comprehension, and hopefulness … on a pathway toward a cure. Thank you for joining us, thank you for your support, and thank you for being part of Team GLA.

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Click here to donate to our year-end campaign #BePartOfTheCure

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.

 

 

 

 

 

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 

What the proposed NIH budget cuts mean for Lyme disease research

GLA CEO Scott Santarella shares his view on what the proposed NIH budget cuts could mean for Lyme and tick-borne disease research.

 

by Scott Santarella, CEO, Global Lyme Alliance

As we learned last week, the Trump administration’s projected fiscal 2018 budget constitutes a radical reallocation of federal spending. The $5.8 billion in proposed cuts to the National Institutes of Health (NIH) budget would alone effectively defund thousands of biomedical research programs—in order to fund more military spending.

While this budget will be debated for some time to come, we are convinced that the proposed cuts would represent a grievous setback for Lyme and tick-borne disease research. The view that the security and prosperity of our country must come at the expense of medical research is simply incorrect. Research is an economic driver.

Government funding for Lyme and tick-borne disease research is already minimal, with only 17% of applications addressing Lyme approved by NIH every year. Yet the loss of even that small increment of funding would represent an unprecedented abandonment of those individuals suffering from this terrible disease.

Global Lyme Alliance is a dynamic and rapidly growing organization whose contributions to improved diagnostics and treatment modalities have been crucial. Still, it would take us years to supplant the lost NIH investment in Lyme and tick-borne disease research. The Lyme community cannot afford to face a gap of years in which research progress is static.

Lyme and tick-borne disease patients already face the great injustice of still having no definitive diagnostic test and only limited treatment options. Left untreated, or inadequately treated, Lyme’s victims suffer devastating health outcomes. To further compound that injustice by thwarting research progress is unconscionable. With 329,000 people in the U.S. diagnosed with Lyme disease annually, this is the wrong time for surrender.

Global Lyme Alliance will continue to do what it has always done to maximize its fundraising operations. But make no mistake, the loss of NIH research dollars would be deleterious beyond our imagining. We hope you will make your voice heard and send a clear message to your Congressional representatives to ensure federal funding levels for Lyme and tick-borne research remain strong.

Scott Santarella

The Lyme Disease Divide

How to Make Sense of Conflicting Lyme Disease Facts

 

by Scott Santarella, CEO, Global Lyme Alliance

With the possible exception of HIV, no infectious disease in recent history has been as misunderstood and divisive as Lyme disease.  On one hand, there are tens of thousands of people suffering from debilitating physical and neurological symptoms who are unable to get the help they need from physicians, public health officials and insurance companies. On the other hand, the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control and Prevention (CDC) maintain that Lyme disease is “easy to diagnose, easy to cure” and dismiss the persistence of symptoms over time, even after treatment. It’s no wonder that many people are confused about Lyme prevention, symptoms and treatment fundamentals.

Recently we’ve attended a number of public Lyme discussions held in Lyme endemic states and are both encouraged and concerned about how the disease is being discussed by the public and some in the medical community.

One event we attended focused on the very real threat of Lyme disease and children. Children ages 3-14 have a higher risk of contracting Lyme because they are physically closer to the ground, where ticks are plentiful. Children play in the grass, roll in leaves, run through bushes, thus increasing their exposure to Lyme-infected ticks. But because the symptoms of Lyme can be varied and non-specific—headaches, joint pain, anxiety, confusion, memory loss, anger, insomnia, for example— parents and teachers may not realize their children are ill. And physicians who are not well-versed in Lyme may not attribute it to the illness.

We were glad to hear speakers talk about the challenges in diagnosing Lyme and co-infections. If the disease is left untreated, it can cause a host of problems that can severely affect children’s long-term health, their behavior and school performance. Current Lyme tests are highly inaccurate, so diagnosis should be a combination of testing and a consultation with a Lyme-literate doctor.

Those attending the event walked away with a clear understanding of the true challenges related to Lyme disease in children. And also the importance of being a strong advocate for your child—you know their symptoms better than anyone. However, we attended another talk that was riddled with common misperceptions about the disease’s symptoms, diagnosis and treatment. A few examples:

What We Heard: Lyme is a very treatable, curable disease.
FACT: Although Lyme can be cured if diagnosed and treated in the early stages, up to 20 percent of those who are treated still go on to develop serious chronic symptoms including severe fatigue, muscle and joint pain, insomnia, headaches and “brain fog.”

What We Heard: It takes 36-48 hours for tick to infect a person.
FACT: The longer a tick is attached, the higher the risk of transmission. But it is possible to get Lyme disease even if a tick is attached for less than 24 hours.

What We Heard: If you have Lyme, you will see a clear bull’s eye rash, unless it’s on your back or somewhere hard to see.
FACT: Not everyone who has Lyme exhibits a rash, much less a bull’s-eye rash.  At least 20 percent of patients never develop the rash and fewer than 50 percent of Lyme patients ever recall seeing one. If you are “lucky” enough to see any type of rash, take a picture to show your doctor. A flu-like condition is also a common sign of Lyme infection and it can occur with or without a rash.

What We Heard: There’s a lot of bad press about the tests not being good.
FACT: There is still no reliable diagnostic test for Lyme. The standard blood test lacks sensitivity and is more than 55% inaccurate.

What We Heard: You shouldn’t need more than 4 weeks of antibiotics, 6 at the most if the patient requests it.
FACT: Existing guidelines from the CDC recommend against treating Lyme disease-positive patients with antibiotics for more than 28 days. However, up to 20% of patients treated with this recommended course of antibiotics will have lingering symptoms such as fatigue, pain, or joint and muscle aches. Longer treatment is advocated by the International Lyme and Associated Diseases Society (ILADS), based on a patient’s symptoms.

What We Heard: It’s very atypical with late Lyme disease for one’s hands and feet to be affected.
FACT: Although knee pain is most common in late-stage Lyme, the disease can cause pain and tingling in other body parts. In addition to Lyme, a tick can carry other tick-borne co-infections as well such as Babesia, Bartonella and Ehrlichia and transmit them in a single bite. When a patient suffers from atypical symptoms, a doctor must also consider possible co-infections as the cause.

What We Heard: Getting a tick tested for Lyme is unnecessary unless you think it helps the town learn how many cases of Lyme disease it has from ticks.
FACT: Some doctors will not treat a patient until symptoms of Lyme disease have manifested and this loss of precious treatment time often results in more severe symptoms. Tick testing can help you make treatment decisions before symptoms arise since testing may reveal the presence of other disease-causing co-infections the tick is carrying and transmitting.

The challenges in diagnosing Lyme and its co-infections early make it difficult for both the patient and the clinician. Knowing the facts about the disease can help. Your best option is strong prevention, but that’s not fail-proof. If you feel that you or someone you love may have Lyme, learn the symptoms and contact a Lyme-literate doctor for guidance. Please explore our website for the latest information, resources and support.

Scott Santarella

 

 

 

Letter from CEO on Lyme Disease Research Initiatives

Global Lyme Alliance CEO Scott Santarella highlights key research initiatives in the 2015-2016 grants cycle.

 

Thanks to the generosity of our donors, Global Lyme Alliance has had an exceptionally productive year. We have awarded over $1 million in new research grants during the 2015-2016 grants cycle. This constitutes nine new studies, an all-time institutional high, by exceptional researchers at leading U.S. universities.

With 329,000 new cases of Lyme each year, and very limited federal funding, privately-funded research like GLA’s is more critical than ever. Without question, the quality of our Lyme research is second to none. GLA’s outstanding grantees are conducting exciting research in diagnostics, disease processes and potential treatments. In fact, our grantees are the paradigm busters who are closely followed by the rest of the Lyme community. Current grantees are:

  • Armin Alaedini, Ph.D., Columbia University, is identifying how antibodies change with disease progression in Lyme patients;
  • Nicole Baumgarth, DVM, Ph.D., UC-Davis, is analyzing how the immune system responds to Lyme bacteria;
  • Chris Janson, M.D., UI-Chicago, is focused on the neurological effects of Lyme;
  • Alla Landa, Ph.D., Columbia University, is studying chronic pain in post-treatment Lyme syndrome patients;
  • Kim Lewis, Ph.D., Northeastern University, has tested pulse-dosing antibiotics to more effectively treat Lyme patients;
  • Benjamin Luft, M.D., SUNY-Stony Brook, is developing new diagnostic tests;
  • Karen Newell-Rogers, Ph.D., Texas A&M University, is studying neurological Lyme disease in mice;
  • Eva Sapi, Ph.D., University of New Haven, continues her work studying biofilms;
  • Ying Zhang, M.D., Ph.D., Johns Hopkins University Bloomberg School of Public Health, is evaluating possible drug combinations for Lyme treatments.

Meanwhile, four distinguished new members have joined our Scientific Advisory Board. They are Catherine Brissette, Ph.D., University of North Dakota; Richard Goldstein, DVM, Chief Medical Officer, Animal-Medical Center; Andreas Kogelnik, M.D., Ph.D., director of the Open Medicine Institute, and Neil Spector, M.D., Duke University.

Our spectacular momentum comes down to a single, irreducible phenomenon: our donors. I hope you will join us at our 2nd annual “Uniting for a Lyme-Free World” Gala on Thursday, October 13, 2016, at Cipriani 42nd Street in New York City. As GLA’s new CEO, I look forward to meeting you at what promises to be a very special event.

Scott Santarella