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.
Tell us about the Lyme Disease Biobank (LDB). Why is a biobank an important undertaking, particularly for the field of Lyme research?
“The Lyme Disease Biobank is a collection of human biological samples that catalyzes and facilitates research in Lyme disease and other tick-borne infections. We are collecting blood samples from people with suspected acute Lyme disease presenting with or without an erythema migrans (EM) or annular rash (cases) and also unaffected individuals (Lyme disease negative controls).
“Researchers lack the samples they need for their work in Lyme disease. Especially for early, acute cases, patients typically present at the emergency room, urgent care, or to a family physician. These patients typically are not presenting at academic medical centers – the places where there is a lot of research happening. It’s more challenging to collect samples in these research facilities. Plus, most researchers are focused on doing the research, not setting up collaborations to collect samples, which can be time-consuming, complicated, and laborious.
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
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.
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.
Following on our story about financial resources for Lyme patients, we received this submission from Eric Minghella, an Outreach Coordinator for the Disability Benefits Help Center, offering to help clarify the process of applying for coverage.
“I came across the Bay Area Lyme Foundation this morning and I was so impressed by the work you do for people who have been affected by Lyme Disease. The resources and awareness you provide for families in need are so valuable and very much needed. I was wondering if I could contribute to the Bay Area Lyme Foundation by writing an article on applying for Social Security benefits with Lyme Disease. I work for Disability benefits help and I know that the process can be very confusing.”
As many know, treatment for and recovery from Lyme disease can be a long and costly process for those who suffer chronic symptoms. Applying for financial support can be a perplexing and tiresome endeavor, however, there are resources to assist you and you may find answers here.
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.
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.