Making a Contribution and Feeling Heard—One Lyme Patient’s Experience of Participating in the Lyme Disease Biobank

Lyme Disease Biobank Collection

BAL Spotlights Series

 

In June of this year, Lyme Disease Biobank (LDB), led by Principal Investigator Liz Horn, PhD, MBI, conducted sample collection days at our partner site, Gordon Medical Associates, in San Rafael, CA. During the two-day event, we took the opportunity to sit down and talk with participants, hear their Lyme disease stories, and learn what motivated them to donate blood and urine samples to LDB.

Sarah Reid’s Lyme story is not dissimilar to the stories of many Lyme patients in California. She never saw a tick; she never had a rash; and for a very long time—despite countless doctors’ appointments, interventions, tests, and hours of research—she had absolutely no diagnosis for her bewildering kaleidoscope of symptoms. When she finally received confirmation from lab tests ordered by Gordon Medical Associates that she indeed had Lyme and Bartonella, the news was a massive relief initially. She finally had answers. However, as the diagnosis sunk in, it sparked reflection on her lifelong health struggles and launched her into a new world of confusion, frustration, and decision-making as she learned to navigate and manage her Lyme.

Patient Participation is the Key to Research Gains

Biobank collection at Gordon Medical Associates

BAL Leading the Way Series

 

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.”  –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.”  – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, CA. Persistent/chronic Lyme patients traveled from as far away as Sacramento, CA, and Reno, NV, to donate blood and urine samples to the Biobank. LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

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Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

Winners Nichole Pedowitz PhD, of Stanford University and Peter Gwynne PhD, of Tufts University will focus on developing novel diagnostic tests that can identify patients with Lyme disease

PORTOLA VALLEY, Calif., August 9, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipients of the 2022 Emerging Leader Awards (ELA), which are designed to support promising scientists who are advancing development of accurate and effective diagnostic tests. Both awardees this year are focused on diagnostics, which is particularly important as the current gold standard diagnostic test has been shown to be insensitive in up to 60% of early-stage disease. 

This year’s winners are Nichole Pedowitz, PhD, of Stanford University, who will receive $100,000 for her work to develop a new rapid diagnostic to directly test for the bacteria that causes Lyme disease and Peter Gwynne, PhD, of Tufts University, who will receive $100,000 to further identify antibodies which may be markers of persistent Lyme disease infection.

“The lack of a reliable test for Lyme disease makes it not only impossible to ensure that patients receive prompt, appropriate care but also challenging for scientists and clinicians to evaluate emerging treatments,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that Drs. Pedowitz and Gwynne will make strides toward the development of diagnostic tests that will be effective in identifying Lyme patients at various stages of the disease.”

Patient Samples Fuel Development of Innovative Test to Diagnose Early Lyme Disease

Lyme Disease Biobank

BAL Leading the Way Series

 

Lyme Disease Biobank

 

A new type of Lyme disease test aimed at early-stage infection detection is hitting doctors’ offices, and we all should thank Lyme patients for making this happen. This test named T-Detect Lyme, was recently unveiled by Adaptive Biotechnologies, and is an advanced indirect-detection blood test that allows for detection of an acute Lyme infection earlier than antibody response tests.

Adaptive Biotechnologies using Lyme Disease Biobank samples
Courtesy Adaptive Biotechnologies

Our Lyme Disease Biobank (LDB) and Dr. John Aucott’s SLICE Lab at Johns Hopkins University provided the Lyme patient blood samples for Adaptive’s new T-Detect Lyme test development. The LDB, a program of Bay Area Lyme, was created in 2014 and began collecting patient samples in 2015 specifically to drive this form of diagnostic innovation. By engaging Lyme patients and providing well-characterized samples to approved researchers and partnering with innovative organizations like Adaptive, the LDB research engine is now delivering long-planned-for results.

“This breakthrough from Adaptive validates the power of patient-driven research. Without the participation of patients who gave blood to our Lyme Disease Biobank, this impactful new test could not have been developed,” commented Linda Giampa, executive director, Bay Area Lyme Foundation. “We wish to thank all the patients who came forward to participate in this important program and to encourage others to give samples.”

Fueling the Research Engine

Lyme Disease Biobank

BAL Leading the Way Series

 

How a chance meeting and the harnessing of big data led to a research initiative that’s finding answers in Lyme and tick-borne disease

Many different groups comprise the Lyme disease community including patients, their families, healthcare providers, researchers and nonprofit organizations. These nonprofit organizations and foundations may differ in size, structure, fiscal basis, focus and approach, but in one important aspect they are united: the search for answers.

This search for answers in the realm of Lyme and tick-borne diseases has served as a unifying driver, even when dissent and controversy has sometimes fragmented the Lyme community.  And despite what seems to be a constant uphill battle for recognition and legitimacy of Lyme and tick-borne infections, many believe that we’re on the brink of major breakthroughs to help patients and doctors unlock the medical mysteries that make these infectious diseases so confounding. Two people cautiously optimistic about where we are in the search for answers about Lyme are Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, and Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org and Principal Investigator MyLymeData.

Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

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Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

Foundation Embraces National Focus on Infectious Diseases as Education Tool

PORTOLA VALLEY, CA, January 25, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced that the organization has raised more than $8 million since the beginning of the pandemic of which 100% will be used directly for research and education programs focused on achieving its mission of making Lyme disease easy to diagnose and simple to cure. In 2022, Bay Area Lyme will mark its 10th anniversary, and throughout this year will be reflecting on a decade of achievements by the foundation and the Lyme community while acknowledging the significant challenges that still lie ahead. 

“Although the pandemic presented us with many extraordinary hurdles, it also helped people understand the complicated aspects of infectious diseases—including the importance of accurate diagnostics, the role of antibodies, and the power of effective treatments—all of which are—and continue to be—huge factors in our fight against Lyme and tick-borne diseases,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “The similarities between Lyme and COVID-19 clearly show the critical nature of scientific pursuit, progress and education. The foundation demonstrates consistent, measurable progress unlocking the mysteries of tick-borne diseases, which remain one of the most important health crises of our time.”

How Do You Build a Biobank to Solve the Problem of Lyme Disease? Literally – One Tick Bite at a Time

Lyme Disease Biobank

Science is all about asking questions and finding answers. It attracts the curious, the driven, the questioners and fact seekers—the people who won’t accept the status quo and who are always pushing to learn more. If we keep asking science the right questions, we’re bound to get to the right answers eventually. It’s simple, right?

Unfortunately, not. As with everything about Lyme disease the answers to the questions are not so simple. Lyme is a complicated, nuanced disease with many challenging attributes, so much so that even the most experienced clinicians and medical researchers struggle to understand the many ways the infection impacts the human body. So, if you’re going to try and solve the puzzle of Lyme disease, where is the best place to start? How do you get all the pieces in place to move the needle to solve the complexity of this disease?

Enter Bay Area Lyme Foundation and Principal Investigator, Liz Horn PhD, MBI. When they were planning this project, they asked research scientists in the field of Lyme disease what were their big obstacles to finding out more about Lyme? What did scientists need so that they could start chipping away at the conundrum of this horrible disease?

Bay Area Lyme Foundation Launches Ticktective™ Podcast

Ticktective Podcasts

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Launches Ticktective™ Podcast

PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series.  Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.

“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.

Jacob Lemieux, MD, DPhil and Artem Rogovskyy, DVM, PhD Named Recipients of Bay Area Lyme Foundation’s 2020 Emerging Leader Award

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Jacob Lemieux, MD, DPhil and Artem Rogovskyy, DVM, PhD Named Recipients of Bay Area Lyme Foundation’s 2020 Emerging Leader Award

Biobank Samples to Aid 2020 Emerging Leader Award Winners in Discovery of New Rapid and Sensitive Diagnostics for Lyme Disease Testing

PORTOLA VALLEY, Calif., August 11, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the recipients of the 2020 Emerging Leader Awards, which are designed to support promising scientists who represent the future of Lyme disease-research leadership. Jacob Lemieux, MD, DPhil of Harvard and Massachusetts General Hospital, and Artem Rogovskyy, DVM, PhD of Texas A&M University will each receive $100,000 toward the development of novel direct-detection diagnostic approaches for Lyme disease. Both researchers will utilize biological samples from the Lyme Disease Biobank, a program of the Bay Area Lyme Foundation, working to accelerate research of Lyme disease and other tick-borne infections. Lyme disease is a potentially disabling infection impacting more than 400,000 Americans each year.

“The value of research proposed by our grant recipients is vital to our mission of making Lyme disease easy to diagnose and simple to cure.  In this year of COVID-19, we are pleased to have the opportunity to continue our grant program to fund the important work of these scientists addressing the most crucial requirement for Lyme disease – an accurate diagnostic test,” said Linda Giampa, executive director, Bay Area Lyme Foundation.