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.”

Growing Together Through Strategic Partnership

Bay Area Lyme and Project Lyme partner for the 2018 Gala

Bay Area Lyme New Chapters Series

 

The natural law of things is that when there is a vacuum energy moves into that space to fill it up. The vacuum is then no longer a space or hole, it’s a place or an entity where energies from different locations come together and create new things.

So it is with the Lyme disease community: there are multiple nonprofit organizations across the country that have been founded to tackle complex issues in Lyme and tick-borne diseases, and as a result many people with Lyme—and their families—have stepped up to fill a vacuum and taken matters into their own hands.

Dr Neil Spector
Dr. Neil Spector presenting at the 2018 NYC Gala benefitting Project Lyme and Bay Area Lyme Foundation

In the Lyme disease ecosphere—just as in life—we are stronger, more effective, and more impactful when we join together and pull in the same direction, rather than fragmenting our efforts and competing for resources and attention. This was the simple conclusion that Bay Area Lyme Foundation and Project Lyme came to back in 2018, and the two foundations’ partnership has subsequently gone from strength to strength.

“Bay Area Lyme was looking for an East Coast partner to extend our organizational profile and boost our fundraising footprint in a collaborative spirit,” comments Linda Giampa, executive director of Bay Area Lyme Foundation. “We had a solid network back east and had conducted a number of speaker events in New York City. We thought that joining forces with the right East Coast group could provide us with important connections, amplify our fundraising, and raise our profile nationally.”

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.”

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.”

Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award

ELA winner Michael Rout

FOR IMMEDIATE RELEASE

Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award 

Grant aims to inspire new research for the diagnosis and treatment of Lyme disease

PORTOLA VALLEY, California, December 6, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2022 Emerging Leader Awards (ELA), which recognize U.S. researchers from academia or the private sector who bring new approaches to the field of Lyme disease and embody the future of Lyme disease research leadership. At least two grants in the amount $100,000 each will be awarded. Proposals must have a defined scientific approach and rationale that can advance diagnostics or treatments for Lyme disease, and applicants are encouraged to bring innovative learnings from other therapeutic areas to their research projects. Applications will be accepted through March 15, 2022, at midnight Pacific Time. The full criteria and application for this grant award can be found here.

“The world is seeing firsthand the damage that infections can cause—both in acute and chronic forms. Just has COVID has encouraged collaboration, we hope that existing Lyme scientists as well as scientists from other disease areas will apply for this grant, offering new hypotheses and technologies to diagnose and treat Lyme and other tick-borne disease,” said Wendy Adams, research grant director, Bay Area Lyme Foundation. 

Citizen Scientist Study Fuels Launch of First Series of Interactive U.S. County Maps of Ticks Carrying Diseases

Citizen Science Tick Testing Maps

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Citizen Scientist Study Fuels Launch of First Series of Interactive U.S. County Maps of Ticks Carrying Diseases

– Study finds ticks carrying disease-causing bacteria in 116 counties where they have not been previously documented by CDC –

PORTOLA VALLEY, CA, October 20, 2021—Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the launch of interactive national tick maps of U.S. counties based on data published in mSphere, a multidisciplinary open-access journal of the American Society for Microbiology. The new data identify Ixodes ticks carrying disease-causing pathogens in 116 counties which were not previously identified by the Centers for Disease Control (CDC). 

“The area known to harbor disease-carrying ticks continues to expand, and we hope people across the US will use these interactive maps to learn more about the risks for their hometowns, their family’s residences and vacation spots,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “The citizen scientists contributing to this study allowed the country’s collective tick knowledge to advance further than even the CDC could do at this time. Gaining the support of citizen scientists allowed us to collect from many counties across the country where ticks are not usually collected and tested, or they are not tested for these pathogens.”

Bay Area Lyme Foundation’s LymeAid® Brings Together an Enthusiastic Crowd to Celebrate Momentum in Infectious Disease Research

Bay Area Lyme Board of Directors at LymeAid 2021

FOR IMMEDIATE RELEASE

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

 

Bay Area Lyme Foundation’s LymeAid® Brings Together an Enthusiastic Crowd to Celebrate Momentum in Infectious Disease Research

Dana Carvey and Pop Rocks featuring Mark McGrath energized the supportive audience of scientists, clinicians, patients and philanthropists gathered to advance promising Lyme research 

PORTOLA VALLEY, Calif., September 20, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, hosted its preeminent event, LymeAid, this weekend, its first in-person event since 2019. The event celebrated ongoing research of tick-borne disease, acknowledged important learnings from COVID-19 and pointed to the great need for the advancement of these efforts. Even with smaller numbers to allow for social distancing, LymeAid raised $650,000 of which 100 percent goes directly to fund scientific research, education and prevention programs for Lyme disease. Lyme disease is a potentially disabling infection diagnosed in nearly half a million Americans each year.

Emmy-award winning comedian Dana Carvey, was the Master of Ceremonies and received a standing ovation for his live performance, his first in 20 months. And, Pop Rocks featuring Mark McGrath delivered an outstanding show that got everyone dancing.

A leading U.S. expert on COVID-19 Charles Chiu, MD, PhD, of the University of California, San Francisco presented insights and research related to the similarities between COVID-19 and Lyme disease, including the difficulties in diagnosing each disease.

Herbal Medicines Demonstrate Potency Against Bartonella, a Disease-causing Pathogen, According to New Lab Study

Herbal Medicines Demonstrate Potency Against Bartonella

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

Herbal Medicines Demonstrate Potency Against Bartonella, a Disease-causing Pathogen, According to New Lab Study

Three of these herbal medicines also have high potency against Borrelia burgdorferi, the bacterium that causes Lyme disease, and Babesia duncani, according to previous lab studies also funded by Bay Area Lyme Foundation

PORTOLA VALLEY, CA, August 5, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the publication of new data showing that herbal medicines have potent activity in test tubes compared to pharmaceuticals commonly-prescribed for the treatment of Bartonella henselae, a bacterium believed  to be carried by ticks and the cause of cat scratch fever. This is the first study to find antimicrobial activity of some of these herbal medicines. Published in the journal Infectious Microbes & Diseases, the laboratory study was funded in part by the Bay Area Lyme Foundation.

“With increasing rates of tick-borne diseases and a consistent concern about the overuse of antibiotics, this early research of herbals is extremely exciting,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “We are hopeful that future pre-clinical and clinical studies will continue to show that herbals have the same effectiveness as this study and other recently-published studies.”