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Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases
The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections
Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.
“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group. “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”
While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.
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Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
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.
by Wendy Adams, Research Grant Director and Advisory Board Member, Bay Area Lyme Foundation
Recently, we’ve started to hear more about Lyme carditis as one potentially lethal manifestation of Lyme disease. What exactly is it, why does it happen, and how does it cause disease?
What is Lyme Carditis?
First of all, a little Latin. When you see the suffix “-itis”, it denotes inflammation – often caused by an infection. So, carditis literally means inflammation of the heart.
When a Borrelia infection enters the body, we know from animal studies that it disseminates quickly. It tries to find the tissues where it is most comfortable, and often that includes the heart. Borrelia can infect all parts of the heart – the myocardium, the pericardium, and the endocardium, the cardiac muscle, the valves, and even the aorta itself. The immune system senses the presence of the spirochete bacteria and induces inflammation, the first prong of the immune system’s response.
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.
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.
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.
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 Adams discusses some important changes to the CDC definitions of Lyme disease and some concerning implications for patients in the state of California.
In January, the Centers for Disease Control and Prevention (CDC) in Atlanta published an updated Lyme Disease (Borrelia burgdorferi) 2017 Case Definition. Lyme disease case definitions have been published since 1995, and the previous definition was published in 2011. The CDC actually is not responsible for this definition; instead it is the Council of State and Territorial Epidemiologists (CSTE) that is responsible for Lyme disease surveillance. Each state has its own State Epidemiologist (see info about CA here). Despite being a federal agency, the CDC can offer input on these definitions but the CSTE is not obligated to accept those suggestions.
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.
It’s All In Your Head. …Or is it?
A Physician’s Perspective
Guest post: Dr. Elena Frid, MD
This week, we feature a guest post from Dr. Elena Frid, a board-certified NYC neurologist and specialist in Lyme disease and other vector-borne diseases. Dr. Frid has been recognized by her peers and patients for her innovative diagnostic methods and treatment regiments for a wide array of complex neuro-Lyme manifestations which often mimic other illnesses including multiple sclerosis (MS), Attention Deficit Hyperactivity Disorder (ADHD), various learning disabilities, Autism, Arthritis, Lupus, Alzheimer’s, Dementia, Parkinsons, anxiety/depression, intractable headaches, dizziness, insomnia, obsessive-compulsive disorder (OCD) behavior, ticks and many more. Here, she shares her perspective on the complexities of treating these complex illnesses.
Over the years, I have seen numerous patients who complain of many neurologic and psychiatric conditions. Often, when a patient complains of more than one or two problems, many physicians can get overwhelmed. It is difficult to treat a patient who seems to have a multitude of problems that, at first glance, may not appear to be related. Part of the issue is that medicine is moving in the direction of treating symptoms, and not the underlying cause of the problem.
Sharane Dorrah is on a mission … A passionate hiker, mountain biker, skier, and general outdoors enthusiast who suffered years of debilitating illness due to the unfortunate bite of a Lyme-infected tick, Sharane is determined to ensure that the rest of the world avoid her nightmare through greater awareness and protection.
The company she launched this past year, Peskys, offers fashionable performance activewear instilled with an EPA-approved insect repellent to ward off a wide range of “pesky” bugs that can carry serious diseases. Sharane explains, “Sounds dramatic, I know… [but] I’m on a mission to save lives by giving a fashionable option for protection against bites from those pesky bugs that can carry not only Lyme, but also Zika, West Nile, and all those other ‘bug diseases.’ I’m opening my big mouth and creating awareness. And I’m donating protective clothing and other items to children because they are the most at risk for some of these diseases.”
Sharane’s tactics are intriguing. Certainly the spread and the number of serious diseases like Lyme, Zika, and West Nile have forced the issue into the minds of more people; and yet, apprehension or lack of enthusiasm about the preventive tools available — such as chemical sprays, seemingly excessive coverup or avoidance tactics, etc. — mean that far too many of us who love the outdoors remain at risk. Enter this new concept: “performance apparel reinvented into sophisticated style options that meet the demands of day-to-day urban and outdoor active living. Pesky’s insect repellent apparel options perform equally well on the hiking trail as they do pool-side, at the farmer’s market, or in the backyard. They’ll ward off the worst of the season’s mosquitoes and ticks, but they do it without sacrificing style.”