Events Archives - Bay Area Lyme Foundation

Understanding Infection-associated Chronic Illness: How the Immune System Responds to Persistent Infection

Distinguished Speaker Series with Michal Tal, PhD

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“I want to leave you with hope. I think we’re going to be unstoppable because I think that these are solvable problems. These are answerable questions. I think that there are already a lot of existing tools in immunology that just need to be brought into the fight, and we can change this.”

– Michal Caspi Tal, PhD

Michal Caspi Tal: In the chronic illness world, I think that there is something about hope with a capital ‘H’ that is precious. I think it always has to be. I want to talk a little bit about what my lab is doing, where I think we could go in the future and the hope that I have for how we move forward, how we solve this, and how we change this for those who come after us. So, I’ll tell you a little bit about some of the recent things that have come out of the lab, what the lab is working on now, and where we want to go.

New Study Shows How Borrelia burgdorferi Evades the Immune System

Recently, we published a study in collaboration with Hanna Ollila’s lab where we compared people who’ve had Lyme and have had a diagnosis of Lyme versus people who’ve never had a diagnosis of Lyme. We found a genetic difference in a sweat protein that nobody—including me—had ever thought about before. We tested it against the bacteria in our lab, and we saw that it had a huge effect; we tested it in mice, and it had a huge effect. So that’s really exciting. We had another paper that came online yesterday that is one of these last papers from my postdoctoral work over at Stanford, where we actually managed to figure out some of how Borrelia burgdorferi, the bacteria that causes Lyme, manages to evade immune clearance.

Any respectable pathogen that can establish a persistent infection needs to figure out your immune system to the point that it can evade it. The fact that it has persisted means that it was able to evade your immune clearance. And so, I got to that from a very interesting direction working on immune regulation, trying to understand these brakes on the immune response and how they impact the response to infection. The immune system has the power to kill you and obviously, nobody has any incentive for that to happen. So, there are a lot of mechanisms in place to put brakes on the immune system and reign it in. One of the huge developments in cancer over the last two decades has been reevaluating the question: can we take those brakes off? So in my postdoc, I was studying a particular checkpoint where this was turning into an exciting immuno-oncology target, and I said, ‘I want to look at how this checkpoint is used in infection.’ I realized that this checkpoint was being used to help you survive an acute infection, but created a vulnerability for pathogens to evade immune clearance and establish chronic infection much like it allows cancer cells to evade immune clearance. In an amazing collaboration with Irv Weissman, Balyn Zaro, and Jenifer Coburn we realized that the bacteria that cause Lyme disease manipulate this brake and that’s how I became fascinated with Lyme. But I also became concerned about turning off this brake in cancer patients because I was concerned about what would happen if you used this on cancer patients during an active infection. Indeed, the clinical trials on this drug were ended due to increased death from infection, and I wish it hadn’t been tested during a worldwide pandemic.

Young Hearts, Hidden Battles: A pediatric infectious disease physician’s perspective on Lyme disease and neuropsychiatric manifestations

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“Everything about this disease is infinitely more complex and nuanced than is taught to physicians.”

– Charlotte Mao, MD MPH

Charlotte Mao: Thank you Dana for that amazing introduction and Brandi too. I want to thank Brandi for so generously opening up your beautiful home for this event and Bay Area Lyme Foundation for inviting me to speak tonight about my personal perspectives as a pediatric infectious disease physician about Lyme disease in children, particularly neuropsychiatric manifestations.

When Brandi asked if I might give a talk for this Speaker Series, I suggested this topic because, first, I hope there might be something instructive in some of my personal musings on key lessons I’ve learned about Lyme disease in the course of caring for children with this contested disease. Second, I want to highlight neuropsychiatric manifestations because I feel they generally are the least recognized by physicians as being potential manifestations of Lyme disease. Yet, taking into account all levels of severity, they are, in my view, actually quite common—certainly not uncommon—and when severe, they are among the most devastating of Lyme manifestations to the lives of children and their families.

Top Lifestyle Interventions to Aid Recovery in Tick-borne Illness: An Interactive Discussion with Concrete Takeaways

By Bay Area Lyme Foundation

BAL Spotlights Series

In this article transcribed from our Distinguished Speaker Series webinar, Sunjya Schweig, MD, founder and CEO of the California Center for Functional Medicine and member of Bay Area Lyme’s Scientific Advisory Board, discusses how recovering from tick-borne illnesses can be aided through carefully devised combinations of conventional and functional medicine, tailored to the individual person. Nancy Chimsky, retired interior designer and Lyme patient, who has been challenged with tick-borne infections since 1997, shares her personal Lyme story in the first part of this webinar.

Dr. Schweig discussed the top four lifestyle areas critical to aiding recovery and explains how and why optimizing each area is key to treating and managing Lyme and tick-borne disease. The lifestyle areas are:

Diet and nutrition
Stress reduction and neuroplasticity
Sleep
Detoxification

Dr. Schweig also discussed the important role that botanical and herbal medicines have in recovery. He discusses the individualized nature of treatment and testing for Lyme disease, including the use of various lab tests and the consideration of co-infections. Finally, Dr. Schweig emphasizes the importance of finding the right healthcare practitioner who can address the complexity of Lyme disease and provide appropriate treatment. The session concludes with a Q&A session about what people are doing to manage their health, and Dr. Schweig provided practical suggestions and concrete takeaways based on these questions from attendees.

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.

Treating Complex Chronic Diseases: Novel Therapeutic Options for Lyme Patients

Bay Area Lyme Speaker Series with Steven Harris

By Bay Area Lyme Foundation

BAL Happenings Series

Bay Area Lyme Speaker Series San Jose 2022 — Dr Steven Harris speaking at the Bay Area Lyme Speaker Series in San Jose, September 29, 2022

Dr. Steven Harris, a physician specializing in Lyme at Pacific Frontier Medical, was guest speaker as part of our Distinguished Speaker Series. His presentation on the complexity of tick-borne diseases is transcribed below to share his invaluable insights into novel treatment options for those living with chronic/persistent Lyme and other intractable infections that severely curtail patients’ quality of life, bringing hope and restoring health to many. Note: This transcribed presentation has been edited for clarity.

What is “Precision Medicine”?

“The concept of precision medicine, which is a growing area, is where we look at an individual and try to create a tailored plan for that person. I think many doctors wish that we could have a ‘cookbook’ approach to medicine that would work for our patients. But unfortunately, that approach doesn’t work. Luckily, here in the San Francisco Bay Area, there are doctors offering precision medicine including Dr. Sunjya Schweig in Berkeley, Dr. Christine Green, with us at Pacific Frontier Medical, and Dr. Eric Gordon, at Gordon Medical Associates in Marin and others. And thankfully, we have Stanford and UCSF (our local medical centers) that we work peripherally with. In addition, the Open Medicine Foundation is making great strides in understanding illness and Dr. Mike Snyder’s group at Stanford who are working on multi omics for chronic fatigue that track an individual patient’s data.

“These doctors are working in their own fields, not necessarily just tick-borne diseases, but our work overlaps. For example, the Snyder Lab multi-omic study involves genomics, epigenomics, metabolomics, where they are looking at tons of data and assimilating a lot of this different data to try to create treatment plans that work for the individual, because of the fact that a ‘cookbook’ approach doesn’t work for this group of chronic complex patients. For example, we look at someone’s multi-ome and the parts that make them up, including their microbiome, epigenome among many others, which is becoming a bigger and more exciting field. One of the practical aspects we try to determine is how to address an individual’s level of inflammation, the diversity of their personal bacterial flora, and how to help compensate for any deficiencies—or over abundances—that help contribute to disease.

Growing Together Through Strategic Partnership

Bay Area Lyme and Project Lyme partner for the 2018 Gala

By Bay Area Lyme Foundation

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.”

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

By Bay Area Lyme Foundation

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

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

By Bay Area Lyme Foundation

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.

Gain Strength and Inspiration through the SDLA Empowerment Circle

By Bay Area Lyme Foundation

Written by: Christina P. Kantzavelos

Driven by a desire to create a centralized resource and supportive community for those impacted by Lyme and tick-borne disease, the San Diego Lyme Alliance (SDLA) was formed as an affiliate of the Bay Area Lyme Foundation in 2019. The challenges of navigating Lyme disease are vast and need not be faced alone. So following in the footsteps of past and existing local Lyme support groups, SDLA established three regional “Circle of Support” group meetings in Carlsbad, Scripps Ranch and La Jolla. Creating this safe space for open dialogue enabled Lyme patients, family and caregivers to build meaningful connections, feel supported and stay informed.

In March 2020, life changed abruptly. COVID-19 demonstrated the importance of human communication and connectedness, with a rise in feelings of isolation, depression and anxiety. While the pandemic presented the challenges of isolation, it also provided the opportunity to explore new ways of interacting and building meaningful connections. Quick to adapt to the online virtual world via Zoom, the “Empowerment Circle” (EC) was born in June 2020. Initially facilitated by Mark Guay, Christina P. Kantzavelos and Patricia Cosulich have joined as co-facilitators to round out the EC Team. Over time our group has brought together participants from San Diego and beyond, including San Francisco, the east coast, and even Canada. The pandemic presented an unexpected opportunity to bring people together more effectively, transcending time, geographical separation and physical limitations.

Bay Area Lyme Foundation and Project Lyme Join Forces to Fight Lyme Disease at the 2018 Lyme Gala

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation and Project Lyme Join Forces to Fight Lyme Disease at the 2018 Lyme Gala

Event Raises Awareness, and $1.4 Million for Research Related to Lyme Disease and other tick-borne illnesses, which can potentially be disabling, and even life-threatening

New York, NY, November 6, 2018 – Bay Area Lyme Foundation and Project Lyme, two organizations committed to halting the course of Lyme disease, came together to highlight the need for collaboration in the fight against Lyme during the inaugural 2018 Lyme Gala. The collaboration aims to improve awareness, education, and research of Lyme and other tick-borne infections, which can potentially be disabling, and even life-threatening. With Bay Area Lyme Foundation’s expertise working with scientists and institutions to implement valuable research, develop impactful educational programs and create novel initiatives such as the Lyme Disease Biobank, and Project Lyme’s focus on increasing awareness and improving education, these organizations hope to one day make Lyme and other tick-borne diseases easy to diagnose and simple to cure.

“Lyme disease is the most important health crisis of our time,” said 2018 Lyme Gala honoree, Bill Ford, CEO, General Atlantic. “This disease demands that we recruit and fund the best medical minds to fund a cure, and I am hopeful of the efforts of Project Lyme and Bay Area Lyme Foundation toward this goal.”