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,“
Bay Area Lyme Foundation’s LymeAid® Brings Together an Enthusiastic Crowd to CelebrateMomentum 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.
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.
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.”
George Church, Ph.D., Ting Wu, Ph.D., Steven E. Phillips, M.D. and Michal Caspi Tal, Ph.D., Named Recipients of Bay Area Lyme Foundation’s 2018 Emerging Leader Award
– Genomics, immunotherapy and unraveling the stealth attributes of Lyme disease are the focus of the 2018 Emerging Leader Award projects, designed to inspire new Lyme disease research –
PORTOLA VALLEY, Calif., May 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the recipients of the 2018 Emerging Leader Awards, which are designed to encourage promising scientists who embody the future of Lyme disease-research leadership.George Church, Ph.D. and Ting Wu, Ph.D. will each be awarded a $250,000 grant to launch the Genomic Lyme Disease Research Initiative project at Harvard Medical School, and Michal Caspi Tal, Ph.D. and Steven E. Phillips, M.D. will each receive $100,000 toward therapeutic research related to immunotherapy and an innovative new drug aimed at eliminating chronic tick-borne infections, respectively. Lyme disease is a potentially devastating infection impacting more than 300,000 Americans each year.
Bay Area Lyme Foundation Awards Grants to Researchers Exploring Novel Ways to Detect, Treat Lyme Disease
Massachusetts Institute of Technology and Brandeis University Researchers are the Awardees of the 2017 Emerging Leader Awards
Portola Valley, Calif., July 11, 2017 – Bay Area Lyme Foundation, the leading national nonprofit funder of innovative Lyme disease research, today announced that the winners of its 2017 Emerging Leader Award, are James J. Collins, PhD, Professor, Massachusetts Institute of Technology and Yuko Nakajima, PhD, Postdoctoral Fellow, Brandeis University. Dr. Collins was awarded a $250,000 grant to research an RNA direct detection diagnostic for early Lyme disease, while Dr. Nakajima received a $100,000 grant to investigate potential treatments to block immune evasion by the bacteria causing Lyme disease.
Bay Area Lyme Foundation’s LymeAid 2017 Raises $850,000 to Boost Lyme Disease Research
The event highlights the increasing level of scientific commitment toward Lyme disease and fosters much-needed investment and research in diagnostics and treatments for the disease
Portola Valley, CA (May 22, 2016) – Bay Area Lyme Foundation, the leading public not-for-profit sponsor of innovative Lyme disease research in the US, brought together scientists, philanthropists, celebrities and patients for the fifth annual LymeAid®, an event aimed at making Lyme disease easy to diagnose and simple to cure.The benefit dinner and concert raised more than $850,000, of which 100% will go directly to fund research for Lyme disease. During the past 5 years, the event has collectively raised $2.4 million specifically for Lyme disease research.
On Wednesday, March 8, Dr. Sunjya Schweig and his wife, Lia Gaertner, together gave a deeply affecting and informative presentation sharing their personal and professional experiences with Lyme disease. The talk was part of the ongoing Distinguished Speaker Series. What follows is a synopsis of some of the highlights.
Lia Gaertner, a member of the Bay Area Lyme Foundation Science Committee, and Dr. Schweig, who is on the foundation’s Advisory Board, bring a wealth of professional expertise and knowledge to the table. But their story starts on a personal note, for it was just one month after Dr. Schweig started working in private practice that Lia — after 10 years of battling serious illness, unexplained symptoms, and debilitating physical and mental challenges — was finally diagnosed with Lyme disease. Together, the couple took what they describe wryly as a “rapid descent together down a rabbit hole” – a deep dive into Lyme, trying to learn as much as possible for their survival.
Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event
White House Acknowledges Contributions of Program Organizers
Toward Solving Challenges of Lyme Disease
(Cambridge, MA,) October 5, 2016 — As part of the White House Open Data Innovation Summit, Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, announces the winning teams of Lyme Innovation.Lyme Innovation is the first ever Hackathon for Lyme disease, which provided a forum for more than 100 scientists, clinicians, researchers, entrepreneurs, and investors from a variety of disciplines to brainstorm solutions for this potentially devastating disease.
This week’s presentation was just that — a moving discussion of Jordan’s personal experience and reflections battling Lyme disease, what he describes as the toughest 9 1/2 years and biggest struggle of his life (and this from a man who nearly lost his life during blizzard conditions on the top of Mt. Shasta!).