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

FOR IMMEDIATE RELEASE

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.

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. 

Bay Area Lyme’s November 2021 Speaker Series Event: Bringing Hope and Support to Lyme Patients in San Diego

Bay Area Lyme San Diego Speaker Series

BAL Happenings Series

 

Why is the human immune system so complicated? Why are Lyme and tick-borne diseases so challenging for medical scientists to understand and for doctors to treat? And what is happening in the world of Lyme disease research that may offer hope to patients suffering from the effects of Lyme and TBDs on their continually assaulted immune systems?

On November 3, Bay Area Lyme Foundation and Sanford Burnham Prebys Medical Discovery Institute jointly hosted an audience of physicians, scientists, patients, supporting family members, and medical providers in La Jolla, CA, to hear a panel of distinguished speakers address the subject of how the human immune system responds to the bacterial or viral assault of a tick-borne infection.

The San Diego event was part of Bay Area Lyme Foundation’s ongoing Distinguished Speaker Series. The Speaker Series format brings together a panel of distinguished individuals, typically including a researcher, a physician, and a Lyme patient advocate. By giving varied perspectives on topics relevant to Lyme and tick-borne diseases (TBDs), Bay Area Lyme provides a platform for the discussion of new scientific discoveries and other developments relevant to Lyme. The series also fosters community-building for patients seeking answers to the challenges of this debilitating disease.

Part of this session’s discussion explored the frustration experienced by countless Lyme patients that most medical providers and physicians are so poorly educated regarding Lyme and TBDs. “They don’t test for all types of TBDs, don’t agree on treatments, aren’t trained to recognize or treat heart problems caused by TBDs, and over-prescribe powerful immune suppressants which can be deadly for TBD patients,” criticized David Haney, PhD, biochemist, patient advocate and panelist. “San Diego physicians are under the mistaken impression that there is no Lyme disease in California, but it has been established in the state since the 1970s. People also travel, and a tick-borne infection is more than just Borrelia burgdorferi. This has been proven in multiple studies,” he added. “Academic studies show that Babesia duncani and several species of tick-borne Borrelia are more prevalent in the West than the East.”

Traditional healthcare needs to learn to diagnose and treat tick-borne diseases,

– David Haney, PhD

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 Selects National Winners of the 2021 Emerging Leader Awards to Advance Research for the Diagnosis and Treatment of Lyme Disease

2021 Emerging Leader Awards

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Selects National Winners of the 2021 Emerging Leader Awards to Advance Research for the Diagnosis and Treatment of Lyme Disease

Brandon Jutras, PhD of Virginia Tech, Nitya Ramadoss, PhD of Stanford University and Michael P. Rout, PhD of The Rockefeller University are this year’s recipients

PORTOLA VALLEY, Calif., July 6th, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the recipients of the 2021 Emerging Leader Awards (ELA), which are designed to support promising scientists who represent the future of Lyme disease research leadership. Michael P. Rout, PhD of The Rockefeller University will receive $250,000 for his work with nanobodies to develop a sensitive point-of-care diagnostic. Brandon Jutras, PhD of Virginia Tech and Nitya Ramadoss, PhD of Stanford University will each receive $100,000 toward the development of a novel direct-detection diagnostic approach for Lyme disease and a novel therapeutic based on B-cell mapping, respectively. Lyme disease is a potentially disabling infection diagnosed in nearly half a million Americans each year.

“As there is not a diagnosis or treatment that works for all patients, there is a critical need to develop direct-detection diagnostics as well as treatments that can prevent the development of persistent Lyme disease, and we are excited to support these novel approaches that have shown success in other areas,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

Two of the award winners will utilize biological samples from the Lyme Disease Biobank, a program of the Bay Area Lyme Foundation, to collect well-characterized human tissue, blood and urine specimens to accelerate research of Lyme disease and other tick-borne infections.