Bay Area Lyme Foundation’s LymeAid 2017 Raises $850,000 to Boost Lyme Disease Research

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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.

National Lyme BioBank: Enabling a New Wave of Lyme Research

nldb-bannerThe 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 HornLiz 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.

Participating in Clinical Research: Another Treatment Alternative?

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?

It’s All In Your Head. …Or is it? A Physician’s Perspective

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.

Lyme Disease and Disability Benefits

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.

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

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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.

Tick Saliva and Borrelia Spirochetes: A Novel Approach to Lyme Diagnostics

grasperge_rev_lores-250-x-250Bay 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. 

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

Bay Area Lyme Foundation Responds to News Related to Initial Studies of Lyme Disease

Portola Valley, CA, October 12, 2016 – Bay Area Lyme Foundation, an organization dedicated to making Lyme disease easy to diagnose and simple to cure, is deeply disturbed by the news that researchers involved in the initial discoveries of Lyme disease omitted critical information related to additional bacteria that may have contributed to illness in early cases. This information was revealed in a story today in STAT News titled “The ‘Swiss Agent’: Long forgotten research unearths new mystery about Lyme disease.”

This new development clearly points to a critical need to reexamine much of the current orthodoxy in Lyme disease.

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

2017 additional award invites applications from Associate Professors through Full Professors

Silicon Valley, California, October 3, 2016 – Bay Area Lyme Foundation, supporter of research aimed at making Lyme disease easy to diagnose and simple to cure, announced today that it is beginning to accept applications for a new $250,000 grant award that has been added to its existing “Emerging Leader Award” portfolio of yearly funding.  Made available to researchers through the generosity of the Steven and Alexandra Cohen Foundation and the Laurel Foundation, the portfolio also includes the $100,000 “Emerging Leader Award” which has previously been granted to researchers from Harvard, Stanford, UCSF, NC State and Louisiana State University.

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