Blog - Page 6 of 22 - Bay Area Lyme Foundation

Making a Contribution and Feeling Heard—One Lyme Patient’s Experience of Participating in the Lyme Disease Biobank

By Bay Area Lyme Foundation

BAL Spotlights Series

In June of this year, Lyme Disease Biobank (LDB), led by Principal Investigator Liz Horn, PhD, MBI, conducted sample collection days at our partner site, Gordon Medical Associates, in San Rafael, CA. During the two-day event, we took the opportunity to sit down and talk with participants, hear their Lyme disease stories, and learn what motivated them to donate blood and urine samples to LDB.

Sarah Reid’s Lyme story is not dissimilar to the stories of many Lyme patients in California. She never saw a tick; she never had a rash; and for a very long time—despite countless doctors’ appointments, interventions, tests, and hours of research—she had absolutely no diagnosis for her bewildering kaleidoscope of symptoms. When she finally received confirmation from lab tests ordered by Gordon Medical Associates that she indeed had Lyme and Bartonella, the news was a massive relief initially. She finally had answers. However, as the diagnosis sunk in, it sparked reflection on her lifelong health struggles and launched her into a new world of confusion, frustration, and decision-making as she learned to navigate and manage her Lyme.

Patient Participation is the Key to Research Gains

Biobank collection at Gordon Medical Associates

By Bay Area Lyme Foundation

BAL Leading the Way Series

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.” –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.” – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, CA. Persistent/chronic Lyme patients traveled from as far away as Sacramento, CA, and Reno, NV, to donate blood and urine samples to the Biobank. LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

Winners Nichole Pedowitz PhD, of Stanford University and Peter Gwynne PhD, of Tufts University will focus on developing novel diagnostic tests that can identify patients with Lyme disease

PORTOLA VALLEY, Calif., August 9, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipients of the 2022 Emerging Leader Awards (ELA), which are designed to support promising scientists who are advancing development of accurate and effective diagnostic tests. Both awardees this year are focused on diagnostics, which is particularly important as the current gold standard diagnostic test has been shown to be insensitive in up to 60% of early-stage disease.

This year’s winners are Nichole Pedowitz, PhD, of Stanford University, who will receive $100,000 for her work to develop a new rapid diagnostic to directly test for the bacteria that causes Lyme disease and Peter Gwynne, PhD, of Tufts University, who will receive $100,000 to further identify antibodies which may be markers of persistent Lyme disease infection.

“The lack of a reliable test for Lyme disease makes it not only impossible to ensure that patients receive prompt, appropriate care but also challenging for scientists and clinicians to evaluate emerging treatments,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that Drs. Pedowitz and Gwynne will make strides toward the development of diagnostic tests that will be effective in identifying Lyme patients at various stages of the disease.”

Growing Together Through Strategic Partnership

Bay Area Lyme and Project Lyme partner for the 2018 Gala

By Bay Area Lyme Foundation

Bay Area Lyme New Chapters Series

The natural law of things is that when there is a vacuum energy moves into that space to fill it up. The vacuum is then no longer a space or hole, it’s a place or an entity where energies from different locations come together and create new things.

So it is with the Lyme disease community: there are multiple nonprofit organizations across the country that have been founded to tackle complex issues in Lyme and tick-borne diseases, and as a result many people with Lyme—and their families—have stepped up to fill a vacuum and taken matters into their own hands.

Dr Neil Spector — Dr. Neil Spector presenting at the 2018 NYC Gala benefitting Project Lyme and Bay Area Lyme Foundation

In the Lyme disease ecosphere—just as in life—we are stronger, more effective, and more impactful when we join together and pull in the same direction, rather than fragmenting our efforts and competing for resources and attention. This was the simple conclusion that Bay Area Lyme Foundation and Project Lyme came to back in 2018, and the two foundations’ partnership has subsequently gone from strength to strength.

“Bay Area Lyme was looking for an East Coast partner to extend our organizational profile and boost our fundraising footprint in a collaborative spirit,” comments Linda Giampa, executive director of Bay Area Lyme Foundation. “We had a solid network back east and had conducted a number of speaker events in New York City. We thought that joining forces with the right East Coast group could provide us with important connections, amplify our fundraising, and raise our profile nationally.”

Patient Samples Fuel Development of Innovative Test to Diagnose Early Lyme Disease

By Bay Area Lyme Foundation

BAL Leading the Way Series

A new type of Lyme disease test aimed at early-stage infection detection is hitting doctors’ offices, and we all should thank Lyme patients for making this happen. This test named T-Detect Lyme™, was recently unveiled by Adaptive Biotechnologies, and is an advanced indirect-detection blood test that allows for detection of an acute Lyme infection earlier than antibody response tests.

Adaptive Biotechnologies using Lyme Disease Biobank samples — Courtesy Adaptive Biotechnologies

Our Lyme Disease Biobank (LDB) and Dr. John Aucott’s SLICE Lab at Johns Hopkins University provided the Lyme patient blood samples for Adaptive’s new T-Detect Lyme™ test development. The LDB, a program of Bay Area Lyme, was created in 2014 and began collecting patient samples in 2015 specifically to drive this form of diagnostic innovation. By engaging Lyme patients and providing well-characterized samples to approved researchers and partnering with innovative organizations like Adaptive, the LDB research engine is now delivering long-planned-for results.

“This breakthrough from Adaptive validates the power of patient-driven research. Without the participation of patients who gave blood to our Lyme Disease Biobank, this impactful new test could not have been developed,” commented Linda Giampa, executive director, Bay Area Lyme Foundation. “We wish to thank all the patients who came forward to participate in this important program and to encourage others to give samples.”

Ticktective: A “Professional Persuader” Shares His Bold Discoveries as a Journalist, Author, and Lyme Patient Advocate

By Bay Area Lyme Foundation

Ross Douthat

Ross Douthat, New York Times columnist, political analyst and author, shares his findings on the state of Lyme research, public perception, and his personal experience with tick-borne infections. Previously he was a senior editor of The Atlantic. He is the film critic for National Review, and he co-founded the New York Times’s weekly op-ed podcast, The Argument. Ross’s most recent book is about his experience with Lyme disease and is called “The Deep Places: A Memoir of Illness and Discovery”. Ticktective Video and Podcast Editor: Kiva Schweig.

Watch Now

Ticktective: A Straight-Forward Explanation of the Complications with Lyme Diagnostics and a Potential New Direct Detection Test

By Bay Area Lyme Foundation

Brandon Jutras, PhD

Dr. Brandon Jutras is an assistant professor in the Department of Biochemistry at Virginia Tech whose recent diagnostic project on Borrelia’s peptidoglycans was selected for a Bay Area Lyme Foundation 2021 Emerging Leader Award. With over 25 peer reviewed publications in many of science’s top journals, Dr. Jutras is an expert in explaining existing and potential Lyme diagnostics. Ticktective Video and Podcast Editor: Kiva Schweig.

Watch Now

Fueling the Research Engine

By Bay Area Lyme Foundation

BAL Leading the Way Series

How a chance meeting and the harnessing of big data led to a research initiative that’s finding answers in Lyme and tick-borne disease

Many different groups comprise the Lyme disease community including patients, their families, healthcare providers, researchers and nonprofit organizations. These nonprofit organizations and foundations may differ in size, structure, fiscal basis, focus and approach, but in one important aspect they are united: the search for answers.

This search for answers in the realm of Lyme and tick-borne diseases has served as a unifying driver, even when dissent and controversy has sometimes fragmented the Lyme community. And despite what seems to be a constant uphill battle for recognition and legitimacy of Lyme and tick-borne infections, many believe that we’re on the brink of major breakthroughs to help patients and doctors unlock the medical mysteries that make these infectious diseases so confounding. Two people cautiously optimistic about where we are in the search for answers about Lyme are Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, and Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org and Principal Investigator MyLymeData.

Ticktective: Why Classic Medicine Does Not Work for Complex Chronic Illness Such as Alzheimer’s Disease and Tick-Borne Disease

By Bay Area Lyme Foundation

Dale Bredesen, MD

Dale Bredesen, MD is the author of the New York Times‘ bestseller, “The End of Alzheimer’s” as well as “The First Survivors of Alzheimer’s”. He has held faculty positions at UCSF, UCLA, and UCSD. Dr. Bredesen directed the Program on Aging at the Burnham Institute before joining the Buck Institute in 1998 as the founding President and CEO. Dr. Bredesen has published many scientific journal articles and holds over thirty patents. NOTE: there were technical difficulties with the video recording so the video does not switch between interviewer and interviewee. Ticktective Video and Podcast Editor: Kiva Schweig.

Watch Now

The Complex Science and Politics of Chronic Diseases: Autoimmune, Tick-Borne, Multiple Sclerosis, Fibromyalgia and More

By Bay Area Lyme Foundation

Steven Phillips, MD

Steven Phillips, MD is a Yale-trained physician and co-author of the book, “Chronic: The Hidden Cause of the Autoimmune Pandemic”. He has treated over 20,000 patients from over 20 countries. Dr. Phillips is well-published in peer-reviewed medical literature such as the Lancet and has been featured in popular media such as the NY Times, the Huffington Post, Dr. Oz, Fox’s Lyme and Reason, CBS, Revolution Health Radio with Chris Kresser, Dr. Been, and The Doctors. Ticktective Video and Podcast Editor: Kiva Schweig.

Watch Now