The following is a guest post by one of our esteemed Advisory Board members, Lia Gaertner. Lia is a scientist and also a Lyme patient who has turned her own frustrating experience with the disease into a personal mission to help create greater awareness and understanding about the illness. This year’s explosion in tick counts all over the country necessitates extra vigilance for all of us who enjoy the outdoors. Here, Lia shares some of her family’s precautions.
I am proud to serve as a member of the science team at the Bay Area Lyme Foundation (BAL). As a survivor of two severe Lyme infections on both the East and West coasts of the USA, I know quite a bit about ticks and tick-borne infections. During my twelve-year struggle with Lyme and babesia infections, my physician husband and I had to educate ourselves about ticks and tick-borne infections by going to medical conferences, studying with doctors, reading scientific literature, and mostly by experimenting with dozens of tests and therapies (on me). Now, we both receive daily requests from desperate people who cannot find sufficient information on how to treat their tick bite or tick-borne infections.
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.
The national Lyme Disease Biobank (LDB) launched in Summer 2014 after a successful Fund-A-Need campaign at our annual LymeAid benefit. This initiative, which began with a pilot study in East Hampton, NY, a highly concentrated endemic area for Lyme disease, was designed to help address the shortage of clinical samples to support research into better diagnostics and treatments for Lyme disease. The goal is to create a geographically diverse and robust pool of biological samples (particularly blood, but also tissue and other fluids) characterized with sufficient clinical data and validation information about any co-infections that can then be drawn upon by researchers around the country, allowing for more projects to come to fruition. The biobank has already expanded significantly and released the first samples to researchers last year, supporting a new wave of projects.
Liz Horn, PhD, MBI, a noted expert experienced in building complex biorepositories and other bio-based technological solutions working with a wide array of researchers, institutions, and other agencies, was brought on as the Principal Investigator for the LDB. Dr. Horn has deep expertise in basic science, cancer biology, bioinformatics, registry questionnaire design, and biobank planning and operations.
We talked with Dr. Horn about the progress they have been making at the Lyme Disease Biobank.
Last month, Linda offered five steps that have had a positive impact on the success of Bay Area Lyme Foundation. Over the next several months, she is offering a closer look at each of these steps
For years, venture capitalists and non-profit organizations were seen as polar opposites, the antithesis of one another. But, as non-profit leaders, we can learn a great deal from our venture capitalist counterparts. Venture capitalists aim to ensure the companies they fund succeed, and our role as non-profits is to ensure our mission is accomplished. Both are conduits entrusted with investing the financial resources of others – venture capitalists are beholden to their investors while nonprofits have the same responsibility to their donors.
Lyme disease, particularly with chronic or late-stage symptoms, can be a horribly frustrating and debilitating illness. Symptoms can persist despite complicated treatment regimens; therapies that seem successful at first may become less effective over time; and medications that work for some appear to have no effect for others. Add to that the high cost of treatment, the complicating challenges of co-infections, and insufficient insurance coverage for both traditional and alternative treatment, and it quickly becomes apparent why clinical studies offer potential for patients who are still suffering.
For many patients, the promise of participating in a clinical trial is not just the hope for new discoveries but a more immediate opportunity to access treatment options they may not otherwise be able to secure or afford. But is clinical research the “holy grail” for these patients who are seeking another option? What are the pros and cons of clinical research? What do you need to know?
By Jo Ellis, Education Outreach, Bay Area Lyme Foundation
Bay Area Lyme at 2017 Association of Environmental and Outdoor Educators Annual Conference in La Honda, CA
Spreading awareness about Lyme and tick-borne infections among high-risk groups has been a key objective for our growing education outreach program at Bay Area Lyme Foundation and the Association for Environmental and Outdoor Educators (AEOE) has been part of our overall education outreach strategy. For the last three years, Bay Area Lyme has attended AEOE’s annual spring conference, raising awareness about Lyme and teaching professional naturalists, outdoor educators, and science teachers how to protect both themselves and the children they serve against Lyme and other tick-borne diseases.
By Jo Ellis, Education Outreach, Bay Area Lyme Foundation
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.
While the high-tech business sector is so fast-paced that every day offers valuable progress, my days as CEO in this industry still left me wanting to do more. As many of you can appreciate, I longed to truly make a difference in the lives of other people. And although I did get incredible satisfaction from our company’s progress, I wanted my contribution to society to be more than helping to improve the speed and efficiency of the business world.
So, I decided to make a major life change.
As I considered a range of non-profit opportunities, I focused on identifying a role that would allow me to continue the fast-pace I was used to. It was also important that I use the leadership, operations, marketing and sales skills I had learned and honed through years climbing the ranks of Oracle and helping to start and run several other software companies.
Lyme disease is a nationally notifiable disease, recognized and tracked by the federal government Centers for Disease Control and Prevention (CDC) for surveillance purposes. Surveillance data provides important information for assessing public health risks and allocating research dollars. Per the CDC, “The goal of Lyme disease surveillance is not to capture every case, but to systematically gather and analyze public health data in a way that enables public health officials to look for trends and take actions to reduce disease and improve public health.” However, these statistics have important implications for individual patients as well.
In this post, Bay Area Lyme Research Grant Director and Advisory Board Member Wendy Adamsdiscusses some important changes to the CDC definitions of Lyme disease and some concerning implications for patients in the state of California.
The case definition for Lyme disease is only intended to be used to determine cases for surveillance purposes and not to represent the full incidence of Lyme in a given area. However, this subtlety is often confusing for doctors who see these low case numbers as proof that they do not need to consider a Lyme diagnosis in CA. The low numbers also are convenient for insurance companies who inappropriately use this narrow definition as diagnostic criteria to deny coverage for patients whose cases don’t meet the definition.