By Terri McCormick

As an Illinois State Co-Lead for the Center for Lyme Action, I witnessed firsthand how powerful coordinated advocacy can be.

On February 18, our Illinois delegation joined more than 500 advocates nationwide for Virtual Advocacy Day. We had one clear message for Congress: tick‑borne diseases demand greater attention and stronger federal action.

Representing 274 congressional districts, we met with lawmakers to advocate for increased funding for research, education, diagnostics, and treatment for Lyme disease, alpha-gal syndrome, and other tick-borne illnesses that affect hundreds of thousands of Americans each year.

Center for Lyme Action is now the largest tick-borne disease advocacy network in the country. Since its founding in 2019, it has helped elevate tick-borne disease as a national public health priority.

Sami Kirschbaum

The progress is clear. Federal funding for tick-borne disease has grown from $59 million in fiscal year 2020 to $169.5 million in fiscal year 2026, a sign that Washington is beginning to recognize the scale of the problem.

One of the organization’s earliest milestones was advancing the passage of the Kay Hagan Tick Act in 2019.It established the first national public health legislation dedicated to preventing and controlling tick-related  diseases. The bill marked a turning point in federal coordination and showed what unified advocacy can accomplish.

What we asked Congress

This year, advocates urged lawmakers to support several bills aimed at strengthening the nation’s response to tick-borne illness, including:

• Kay Hagan Tick Act Reauthorization Act
• Alpha-gal Allergen Inclusion Act
• Stamp Out Lyme Disease Act
• Tick Identification Program Act
• LymeX Authorization Act

Behind every congressional meeting is a human story.

Kristina Bauer and son Mason, Texas

Advocates speak not only for themselves, but for the countless individuals still searching for answers. They represent the undiagnosed patient whose symptoms remain unexplained, the child whose illness is too often misunderstood, and families forced to navigate a complex medical system with little guidance.

Virtual Advocacy Day is more than a schedule of meetings. It what’s possible when patients, caregivers, clinicians, and supporters unite. Each conversation builds momentum for improved testing, more effective treatments, and stronger research.

Progress rarely happens overnight, but advocacy is steadily moving the needle..

Advocacy is ultimately about the future. It is about ensuring that fewer people suffer in silence, fewer families endure years without answers, and more patients receive the timely care they deserve. That is a difference worth fighting for.

If you would like to join this growing national movement and help shape the future of tick-borne disease policy, visit the Center for Lyme Action  to learn how you can get involved.

Terri McCormick is a writer and advocate with LymeDisease.org. She is author of the forthcoming book Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease.

More pictures from Virtual Advocacy Day:

Tera Sue Lester

Melinda Sander

Mira Shapiro, Maryland

Monica White, Colorado

Virginia