Blog - Bay Area Lyme Foundation

A New Year Call to Action After December 15, 2025, HHS Roundtable

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

By Charlotte Mao, MD, MPH, Bay Area Lyme Foundation

“Chronic Lyme Disease patients have been ignored for too long. That must end now.”

– Charlotte Mao, MD, MPH

A Long-Overdue Moment of Recognition

Starting in 2026, Lyme disease and other tick-borne disease patients and their families have some reason to be encouraged by the growing recognition of the realities they face and the prospect of continued research to support new diagnostics and treatments.

The December 15, 2025, Department of Health and Human Services (HHS) roundtable marked something rare and long overdue: federal recognition of patient need, grounded in scientific evidence presented by researchers, clinicians, and patient advocates. But patients need more than another moment of recognition. They need results. In 2026, the question is whether that recognition will translate into sustained action, measurable progress, and real improvements in care.

Bay Area Lyme Foundation Statement on the HHS Lyme Disease Roundtable

By Bay Area Lyme Foundation

The December 15, 2025, HHS roundtable on Lyme disease and other tick-borne diseases placed long-overdue national attention on the millions of patients and families who have lived with an “invisible illness” for far too long. One of the clearest messages of the event was that the era of dismissing or gaslighting Lyme patients must end. This reflects what our community has endured for years.

Secretary Kennedy Convenes Lyme Disease Patients and Providers to Announce New Diagnostic Efforts

The Bay Area Lyme Foundation welcomes this federal focus on the urgent need for accurate diagnostics, rigorous patient-centered research, and better access to care, including the acknowledgment that Lyme disease qualifies as a chronic condition within Medicare care frameworks. These priorities closely align with, and have long guided, the work we have led for more than a decade.

We initiated the Lyme Disease Biobank, which is now a cornerstone resource for diagnostic and translational research across the country and has attracted significant support from the Steven and Alexandra Cohen Foundation. Through additional philanthropic investment and scientific collaboration, Bay Area Lyme has also supported or co-funded many of the research advances referenced throughout the roundtable.

Better Tests, Better Answers

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way Series

“The IGeneX test is far more sensitive than most commercially available tests for Lyme disease, detecting far more positive patients compared to standard two-tier ELISA or Western Blot tests,”

– Jyotsna Shah, PhD

Click here to watch or listen now

For people living with or who suspect Lyme disease, getting a clear diagnosis can feel like the hardest part. Symptoms often mimic those of other illnesses, and traditional tests miss many cases.

In this episode of Ticktective™, Dr. Jyotsna Shah, President and Laboratory Director of IGeneX, shares with our host, Dana Parish, how her team is changing that—and how Bay Area Lyme Foundation helped make it possible.

Dr. Shah explains how partnerships between innovative labs like IGenex, Bay Area Lyme Foundation, and our Lyme Disease Biobank are helping deliver faster, more accurate diagnostics—and new hope for patients who’ve struggled for years to find answers.

Ten Years of Data, One Clear Message: We Need to Do Better for Lyme Patients

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way Series

By Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank

“The window for effective antibiotic treatment is narrow. Miss it—because of a false negative test, because symptoms are dismissed, or because follow-up doesn’t happen—and patients can develop persistent Lyme, which can be debilitating.”

– Dr. Liz Horn

After a decade of collecting blood samples, testing the samples, tracking patient outcomes, and analyzing data from more than 800 participants, the numbers tell a powerful story about the gaps in our understanding of how we diagnose and treat early Lyme disease. And it’s made all the more urgent by this summer’s explosion in blacklegged (deer) tick populations across endemic areas.

Our latest Lyme Disease Biobank study looked at more than 250 patients with early Lyme disease on Long Island and in Central Wisconsin who provided a blood draw at enrollment and a second blood draw three months later. Published recently in Frontiers in Medicine, these 10 years of data confirm a few important points that have been known in the Lyme field for years, but the wider medical community may not be aware of.

LymeLnk and Bay Area Lyme Foundation Partner to Bridge the Gap Between Research and Public Awareness

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way Series

“Science moves minds and stories move hearts. This partnership connects two essential parts of the Lyme ecosystem: the research that advances medicine and the communication that inspires action. Together, we’re making education and prevention more accessible.”

– Eva Scarano, Founder and Executive Director, LymeLnk

LymeLnk is a new nonprofit combating Lyme and tick-borne diseases (Lyme+) through community storytelling and education. Founded in 2024 at Parsons School of Design, LymeLnk was born out of founder Eva Scarano’s personal nine-year journey with Lyme+, during which she chose to create meaning from her isolated quest for health.

Eva’s Lyme+ journey began in 2016 with a textbook case: a bull’s-eye rash and flu-like symptoms. Among the fortunate few to receive a prompt diagnosis, she underwent three grueling months of antibiotics and supplemental treatment and was asymptomatic for two years. Everything changed in 2019 when she moved into a mold-infested apartment, triggering a collapse of her immune system—her Lyme markers were back and higher than ever. Years later, Eva had just begun graduate school at Parsons when she found herself at her “rock bottom.” Struggling to remember class material from the day prior or make it past 3:00 pm without a nap, she remained determined to continue her studies and reclaim her health.

Chronic Infections, Fertility, & Immunity: MIT Immunoengineer Makes Groundbreaking Lyme Discoveries

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“There are significant increases after Lyme in fibroids and in endometriosis.”

– Michal Caspi Tal, PhD

Dancing Borrelia, Mikki Tal, PhD — *Borrelia burgdorferi* under attack from the immune system.

Imagine a world where Lyme disease isn’t something people fear, but something we actively prevent, or at least treat more precisely, especially for the many who suffer long after the tick bite. Dr. Michal “Mikki” Caspi Tal, immunoengineer and Associate Scientific Director at the MIT Center for Gynecology Pathology Research, is turning that possibility into reality. Her research isn’t just pushing boundaries, it’s rewriting the rules, especially in regards to women’s health.

“Nobody had looked…at what was happening to the uterus.”

– Michal Caspi Tal, PhD

Watching this incredible Ticktective™ interview with host Dana Parish is an absolute treasure trove of information—and if you or someone you know has ever wondered why some people recover from Lyme and others don’t, why symptoms linger, or why women disproportionately suffer, this is one of the most important conversations you’ll hear this year.

Click here to watch or listen now

Progress from Partnership: Reflections from the Frontlines

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way Series

Guest blog by Lyme Advocate, Meghan Bradshaw, Government Relations Manager, Center for Lyme Action

“Bay Area Lyme Foundation’s leadership, fundraising, and commitment to research and patient advocacy have been a bedrock.”

– Meghan Bradshaw

When I look back over the past few years, I’m struck by how much has changed—for me personally, and for the broader Lyme and tick-borne disease community. And perhaps most of all, I see how partnership and persistence have turned what once felt impossible into genuine progress.

Turning Pain into Purpose as a Living Donor

One of the most powerful examples of Bay Area Lyme’s impact is Lyme Disease Biobank—a groundbreaking resource that provides researchers with high-quality, well-characterized samples to accelerate discoveries in diagnostics and treatment.

I know firsthand what it means to contribute to that effort—with my own body. As a living donor, I’ve donated multiple joints to the Biobank following joint replacement surgeries. It was, without exaggeration, a painful process. But I did it because I believe in turning my suffering into solutions—knowing that those tissues may one day help someone else get diagnosed sooner or treated more effectively.

Accelerating Breakthroughs, Advancing Hope: How Bay Area Lyme Powers Lyme Disease Research

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way Series

“Every one of our success stories amplifies the ripple effect of philanthropy done right: targeted, strategic, and driven by measurable impact.”

– Katariina Tuovinen

For more than a decade, Bay Area Lyme Foundation has been rewriting the story of Lyme and tick-borne disease research. With a mission to make Lyme disease easy to diagnose and simple to cure, the Foundation has built a national reputation as a nimble, entrepreneurial engine for scientific innovation. Since its founding in 2012, Bay Area Lyme has invested more than $31 million to support over 60 groundbreaking studies and partnerships across 56 institutions nationwide, each one helping to transform the landscape of Lyme disease diagnostics, treatments, and prevention.

At the heart of this success lies a small but mighty force: The Bay Area Lyme Science Committee, led by Research Grant Director Katariina Tuovinen, MS, MBA, MA, together with pediatric infectious disease physician Charlotte Mao, MD, MPH, and Liz Horn, PhD, MBI, Principal Investigator of Lyme Disease Biobank. Together, this team guides a grantmaking strategy that prizes bold ideas, cross-disciplinary collaboration, and measurable impact—an approach that has introduced new talent, fresh perspectives, and innovative technologies to a field that desperately needs them.

Dr. Casey Kelley: From Lyme & Mold to Optimum Health

By Bay Area Lyme Foundation

Casey Kelley, MD

Dr. Casey Kelley, MD, is a board-certified family medicine physician and one of the first to earn certification in integrative medicine. Founder and medical director of Case Integrative Health in Chicago, she specializes in functional medicine to address root causes of chronic conditions like Lyme disease and mold toxicity. A graduate of Ohio State University College of Medicine (2007), she completed residency at St. Joseph Hospital, lectures nationally on integrative topics, and serves on faculty at Northwestern’s Feinberg School of Medicine.

Watch Now

Bay Area Lyme Foundation Opens Applications for 2026 Emerging Leader Awards and Research Grants

Emerging Leader Award 2026 call for entries

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Opens Applications for 2026 Emerging Leader Awards and Research Grants

Annual program to fund two $150,000 grants to revolutionize diagnosis and treatment of tick-borne diseases, including new award focused on co-infections

PORTOLA VALLEY, Calif., October 22, 2025 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced its call for applicants from academia and the private sector for the 2026 Emerging Leader Awards (ELA). These annual awards recognize innovative researchers advancing novel approaches in tick-borne disease diagnostics and treatments, while embodying the future of research leadership in this critical field.

In 2026, Bay Area Lyme Foundation will award two $150,000 ELA grants:

Lyme Disease Award will support creative approaches to advancing diagnostics and/or therapeutics for Lyme disease, continuing the legacy started more than a decade ago.
Tick-borne Pathogen Award is a new grant to support research on non-Borrelia tick-borne pathogens/infections occurring in the US, with preference for bacterial and parasitic pathogens. Projects may address co-infections in combination with Borrelia burgdorferi or as stand-alone investigations. Viral infections (e.g., Powassan virus, Heartland virus) are excluded from this category.

Applications are due by February 15, 2026, at 11:59pm PT. Eligible applicants include academic and private-sector researchers at the post-doctoral through associate professor level (or equivalent in industry), including those new to Lyme and tick-borne disease research. All applicants are encouraged to request samples from the Lyme Disease Biobank.

Applicants must demonstrate scientific leadership, a strong supporting rationale, and the ability to generate proof of concept within 12–24 months. While diagnostic and therapeutic approaches are of particular interest, all areas of research relevant to patients will be considered. Submissions require a research proposal and at least one supporting letter from a supervisor or Principal Investigator.

The full criteria and application can be found here. Awardees will be announced at LymeAid in May 2026.