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.
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.
Lyme disease, if treated early, can usually be successfully eradicated with antibiotics. Unfortunately, as many patients know, if it is not diagnosed early, it can cause debilitating sickness and a myriad of symptoms that are much harder to treat. And not all treatments are covered by insurance, making the whole experience potentially very financially as well as physically draining.
One of the questions we often get is about financial support. Bay Area Lyme Foundation is a research organization, hoping to accelerate the discovery of new, more effective — and less costly! — treatments and diagnostics, but unfortunately is not able to provide support for individual cases. However, there are other places to go for help. There are many organizations doing great work to help support those suffering from Lyme, in fact, a growing number as awareness spreads about this pernicious disease. What follows is a partial list, if you know of others, please do share.
New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast, and Midwest Available to Researchers
Qualified researchers now have one-stop access to patient samples from Long Island, San Francisco Bay Area, Martha’s Vineyard, and Marshfield, Wisc.
Portola Valley, Calif., January 24, 2017 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the launch of the Lyme Disease Biobank, which is the first program to provide researchers with blood and urine samples from people with acute Lyme disease from multiple regions across the country, including the East Coast, West Coast and Upper Midwest.
Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016
Foundation demonstrates recruitment of new scientific talent through innovative programs
SILICON VALLEY, Calif., November 28, 2016—Bay Area Lyme Foundation, a leading public nonprofit funder of Lyme disease research in the US, today announced that the organization granted $1.75 million in 2016 for Lyme research and education. Over the year, the Foundation continued to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases. The organization highlights the recipients of the 2016 grant cycle, outlines the benefits of the Foundation’s contributions to Lyme Innovation, and announces their national Lyme Disease Biobank.
Bay Area Lyme recognizes some of the most promising research projects and scientists in the field of Lyme Disease for its annual Emerging Leader Award. These scientists and project teams come from leading research institutions all over the country and are focused on some of the more innovative approaches to developing new diagnostics and treatments for this insidious disease. The award comes with $100,000 of project funding to help bring their research to the next stage of completion or proof-of-concept.
Here, we talked with one of this year’s winners, Britton Grasperge, DVM, PhD, DACVP,Assistant Professor at Louisiana State University in Baton Rouge, LA, as he discusses his novel approach to Lyme diagnostics and also what it’s like to connect the work that’s done in the lab to the very real stories of the human patients suffering through the disease. He was the recipient of the Alexandra Cohen Emerging Leader Award. Dr. Grasperge’s project is entitled “Identification of Tick Chemoattractant(s) for Borrelia burgdorferi.” The goal, he explains, is to design better diagnostics and to improve therapeutics for post-treatment Lyme disease patients who continue to have lingering symptoms even after having been treated.
Dr. Chase Beisel is an Assistant Professor at North Carolina State University who was recognized earlier this year with one of Bay Area Lyme Foundation’s prestigious Emerging Leader Awards. This honor is in recognition of and support for his lab‘s novel work exploring CRISPR technology as a potential treatment for Lyme infections.
Dr. Beisel’s work integrates molecular biology, chemical engineering, and mathematical modeling and has been acknowledged with several National Science Foundation (NSF), National Institute for Health (NIH) and other important awards. His foray into the field of Lyme is a new direction for his lab and ties directly to the Foundation’s aim of attracting some of the brightest and best minds in the country to apply innovative new approaches and methodology to accelerate the development of new diagnostics and treatments for Lyme disease. We are excited about his work and asked him to elaborate further in this recent conversation.
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.