Linda Giampa Archives - Bay Area Lyme Foundation

New Study Demonstrates Protein May Provide Protection Against Lyme Disease

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Study Demonstrates Protein May Provide Protection Against Lyme Disease

Sweat protein protects against Lyme disease in vivo and is a potential therapeutic avenue for drug development

PORTOLA VALLEY, Calif. April 3, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, recently announced the identification of an unknown common missense variant at the gene encoding for Secretoglobin family 1D member 2 (SCGB1D2) protein that increases the susceptibility for Lyme disease as well as two previously known variants. Published in the peer-reviewed journal Nature Communications, this study shows normal versions of the SCGB1D2 protein prevent infection by Borrelia in vivo and appear to be a host defense factor present in the skin, sweat, and other secretions, opening an exciting potential therapeutic avenue for Lyme disease. This research was also featured on NBC10 News in Boston.

“We are excited that our international collaboration with Hanna Ollia’s group and our co-authors has turned up such an exciting and unexplored avenue in the body’s defenses against Lyme disease,” said Michal Tal, PhD, Principal Scientist in the Department of Biological Engineering at MIT, and a Bay Area Lyme Foundation 2018 Emerging Leader Award winner. “This discovery reveals a human protein with protective activity against the bacteria that cause Lyme disease, which we hope could lead to a future path for exploring new methods to prevent and treat Lyme disease.”

This research has shown that the genetic variant of the SCGB1D2 which creates a misshapen protein appears to be specific for Lyme disease and has not been previously reported as associated with any other disease, phenotype, or infection. The researchers also found that about one-third of the population carries a genetic variant of this protein that is associated with Lyme disease in genome-wide association studies (GWAS).

The Long and Winding Road: The Story of Bay Area Lyme’s Multi-Year Quest to Identify Treatments for Lyme Patients

By Bay Area Lyme Foundation

BAL Leading the Way Series

“The opening of a network of Lyme disease clinics is the culmination of many years of tireless work and the vision of a small group of determined women over 10 years ago. We are extremely optimistic that the Lyme Clinical Trials Network will accelerate the development of new treatments for patients with post-treatment and persistent Lyme disease.”

—Linda Giampa, Executive Director, Bay Area Lyme Foundation

When Bay Area Lyme Foundation (BAL) was formed a decade ago, its mission was clear: to make Lyme disease easy to diagnose and simple to cure. “And that’s still our goal,” emphasizes BAL co-founder Bonnie Crater, as she reflects on the last 10 years. However, appreciating the magnitude of the Foundation’s audacious mission requires an understanding of two complex—yet inextricably linked—medical domains: the world of diagnostics, and the world of therapeutics.

Bay Area Lyme Co-Founder Bonnie Crater

The ‘Holy Grail’ for Lyme disease is an accurate diagnostic test—or better yet a suite of specifically designed tests for the different stages of acute and persistent Lyme disease. Although great strides are being made in understanding the infection and the disease’s progression, the ‘silver bullet’ of accurate diagnostic tests continues to elude us. The current diagnostics for acute Lyme (a two-step process with an ELISA either followed by a Western blot or another ELISA) are fraught with problems. These tests may miss up to 70% of acute Lyme cases or deliver false negative results. They are unreliable for detecting acute Lyme and are ineffective indicators for anyone with a persistent/chronic tick-borne infection. (Watch or listen to our Ticktective with Brandon Jutras, PhD, to learn why the current direct detection tests for Lyme are so inaccurate.)

Add to this the fact that FDA-approved therapeutics—or ‘cures’—have not evolved much in 10 years either and foment controversy. A quick internet search on ‘How to treat Lyme disease’ will offer information from the IDSA (Infectious Diseases Society of America) stating that a 10-14-day course of oral antibiotics, such as amoxicillin or doxycycline, will do the job for someone with an EM (Erythema migrans) rash who has early/acute Lyme. But anyone who has had Lyme disease, been treated, and then experienced a continuation of symptoms knows that this recommended course of intervention often fails to clear the infection, leaving some persistent Lyme patients in limbo, and health care providers without an approved treatment protocol. Simply put, this is the continuing underlying treacherous terrain of Lyme, throwing up challenges in both diagnostics and therapeutics.

Bay Area Lyme Foundation Celebrates Its 10th Anniversary with a Convergence of Scientists, Clinicians, Patients and Celebrity Talent

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Celebrates Its 10^th Anniversary with a Convergence of Scientists, Clinicians, Patients, and Celebrity Talent

BAL honors the 2023 Younger Family Emerging Leader Award Winner, announces iHeartRadio partnership and acknowledges the perseverance of patients with persistent Lyme disease

PORTOLA VALLEY, Calif., June 13, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, celebrated its 10^th anniversary in May at LymeAid ®, its preeminent annual fundraising event, and announced Andriy Batchinsky, MD, as the winner of a $150,000 Younger Family Emerging Leader Award. A supportive audience of scientists, clinicians, patients, and philanthropists celebrated progress and commitment to ongoing research into tick-borne diseases, and iHeartRadio announced a partnership in honor of beloved DJ and radio host Jeffrey Vandergrift (“JV”), who passed away with Lyme disease earlier this year. LymeAid raised $683,000 of which 100 percent goes directly to fund scientific research, education, and prevention programs for Lyme disease, a potentially disabling infection that impacts an estimated half a million Americans each year.

Emmy-award winning comedian Dana Carvey, Master of Ceremonies for the event, was joined by The Bacon Brothers and local San Francisco band Pop Rocks, who were the musical guests for this evening of laughter, dining, and dancing to support cutting-edge discoveries and scientific breakthroughs. The fund-a-need for this event was Lyme Disease Biobank, a Bay Area Lyme Foundation program initiated in 2014 to collect and distribute blood, urine, and tissue samples for investigators working on developing diagnostics and treatment for tick-borne diseases.

“This is an amazing time for infectious disease research, offering great hope for patients. While we have made strides, our work is not done. We need to figure out the underlying cause of persistent Lyme disease and find a solution,” said keynote speaker Bill Robinson, MD, PhD, chief of the Division of Immunology and Rheumatology at Stanford University, who shared ongoing research exploring ways to weaponize antibodies against persistent Lyme disease.

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

By Bay Area Lyme Foundation

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

By Bay Area Lyme Foundation

BAL Leading the Way Series

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 Partners with Junior Golf Associations to Educate Thousands of Young Golfers about Tick Bite Prevention

Golfers are at high risk for Lyme disease

By Bay Area Lyme Foundation

BAL Happenings Series

Promoting tick bite prevention and educating everyone about the serious health impacts of tick-borne diseases has been a consistent objective for Bay Area Lyme Foundation. After all, although the foundation’s mission is to make Lyme disease easy to diagnose and simply to cure, it would be so much better if nobody ever got bitten by an infected tick in the first place. But as ticks continue to proliferate and the number of people impacted by Lyme and tick-borne diseases grows, the need for tick bite prevention and education escalates accordingly. That’s why the foundation is excited about its three-year partnership with the American Junior Golf Association (AJGA), and an upcoming announcement with PGAJR, as they provide an unprecedented opportunity to reach thousands of young athletes and their families.

But why are golf courses high risk locations for tick bites? After all, the fairways are mown regularly, and golfers are typically walking around on grass that is short and frequently tended. Surely hiking, mountain biking and running in areas where trails are overgrown and you’re outside at times when infected ticks are most active would be higher risk?

Santa Clara County Declares Lyme Disease Awareness

By Bay Area Lyme Foundation

SAN JOSE, Calif., Aug. 13, 2020 (GLOBE NEWSWIRE) — The Santa Clara County Board of Supervisors unanimously declared Lyme Disease Awareness in the County. The proposal, put forward by Supervisor Dave Cortese, brings a heightened and renewed focus on a growing public health crisis in the County.

On May 13, the Santa Clara County also promoted National Lyme Disease Awareness Month and the Center for Disease Control’s “Tick Lunch and Learn Series” on the County’s social media presence.

“With our belief that being outside is safer than being inside in preventing COVID-19 transmissions, it is important that we call attention to Lyme Disease, which is also a significant public health threat,” said Supervisor Dave Cortese. “Thank you to the Bay Area Lyme Foundation for bringing awareness to this tick-borne disease and the precautions we can take to prevent it.”

Lyme Disease and its co-infections represent the fastest-growing vector-borne disease in the country. Representing a significant public health threat, Lyme is an infectious disease transmitted to humans by the bite of an infected blacklegged tick, found in 56 out of 58 counties in California—or 97 percent. Early detection is key for a quick recovery, and that is where awareness can be life-altering.

Lyme Disease Biobank Expands Into San Diego

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Lyme Disease Biobank Expands Into San Diego

Legislative Commendations Support Importance of New Collection Site’s Efforts To Elevate Research

San Diego, CA, March 6, 2020—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the opening of the San Diego collection site of the Bay Area Lyme Foundation’s Lyme Disease Biobank, which is the first program to provide researchers with blood and urine samples from people with early Lyme disease from multiple endemic regions across the country. Congressman Scott Peters and Council member Chris Cate are scheduled to speak at the ribbon-cutting ceremony for the new collection site, and Council President Pro Tem Barbara Bry, Senator Toni Atkins, and Assembly member Todd Gloria will send representatives to issue commendations to support this event.

“Lyme disease is a growing problem in the County of San Diego, because many of our residents travel to or relocate from other more highly endemic areas and it is also possible to be infected locally,” said Sharon Wampler, PhD, who was instrumental in bringing Bay Area Lyme Foundation’s Lyme Disease Biobank to San Diego. “As a world-class hub for research and innovation, we can be part of the solution. This biobank is an important resource which will help researchers answer many current scientific questions about tick-borne diseases.”

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

Nationwide Free Tick Testing Initiative Will Inform Citizen-Science Studies to Better Understand the Spread of Ticks Carrying Diseases Throughout U.S.

Silicon Valley, CA, July 11, 2019 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the relaunch of its nationwide free tick testing program, which will include an assay for Bartonella, a disease-causing pathogen carried by ticks. Based on the success of the Free Tick Testing Citizen Science program, Bay Area Lyme Foundation has significantly increased funding for the 2019 nationwide collection effort, adding an automated submission process and increased research support. Researchers anticipate this citizen- science program will enable the organization to unearth further discoveries.

Results of the first citizen-scientist study were published in the peer-review journals PLOS ONE in 2018, and International Journal of Health Geographics in 2019. The study, which evaluated the prevalence of disease-carrying ticks throughout the United States, and included a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico, led to the discovery of ticks capable of carrying Lyme and other tick-borne diseases in 83 counties, in 24 states, where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.

Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections

Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.

“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group. “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”

While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.