persistent Lyme disease Archives - Bay Area Lyme Foundation

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.

National Lyme Clinical Trials Network Gains Its First West Coast Center, Thanks to $1M+ Donation from Bay Area Lyme Foundation

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

National Lyme Clinical Trials Network Gains Its First West Coast Center, Thanks to $1M+ Donation from Bay Area Lyme Foundation

The University of California San Francisco Lyme Clinical Trials Center will support innovative clinical trials to develop treatments for patients with persistent Lyme disease

Portola Valley, CA, March 09, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces it has awarded more than $1M to the University of California San Francisco (UCSF) for the development of a Lyme Clinical Trials Center. This new center will become the first West Coast site of the Lyme Clinical Trials Network. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase.

“The founding of the UCSF Lyme Clinical Trials Center provides a unique opportunity for Lyme patients to participate in the next generation of therapeutic trials to combat this devastating disease,” said Charles Chiu, MD, PhD, of the University of California San Francisco who will lead the UCSF Lyme Clinical Trials Center. “Very few clinical trials have been initiated to investigate therapeutic solutions to address persistent symptoms of Lyme disease, and we hope to change this.”

UCSF will join the Lyme Clinical Trials Network led by Columbia University, which includes Children’s National Hospital (part of the National Institutes of Health), and Johns Hopkins University. This important effort is funded by the Steven & Alexandra Cohen Foundation.

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

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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.”