Advocating for Change: A Day on Capitol Hill for Lyme Disease Awareness

By Cindy Casey Holman, RN, Director

On February 18, 2026, I joined more than 500 advocates from across the country for a national virtual advocacy day focused on increasing federal support for Lyme and other tick-borne diseases. The event, organized by the Center for Lyme Action, brought together patients, caregivers, healthcare professionals, and community leaders who share a common goal: ensuring that tick-borne illness receives the attention, funding, and research it urgently deserves.

 

I was proud to be part of “Team Texas,” a passionate and dedicated group of advocates working to elevate the voices of those impacted by tick-borne illness. Our team was led by Kristina Bauer of the Texas Lyme Alliance, whose leadership helped guide us through a full day of meetings with congressional offices. Together, we met with staff representing Senators Ted Cruz and John Cornyn, as well as Representatives Dan Crenshaw, Keith Self, and Nathaniel Moran.

 

Throughout these conversations, advocates shared personal stories about the challenges of seeking diagnosis, treatment, and compassionate care for tick-borne illnesses. These stories help lawmakers understand the real-world impact of diseases that are often misunderstood or overlooked. In my own story, I spoke about my experiences living with tick-borne illness, including Morgellons, and the long and often difficult road many patients face while trying to find answers and support.

“Team Texas” meeting via Zoom. Photo Courtesy of: Cindy Casey Holman

During the advocacy day, participants urged lawmakers to support several important pieces of legislation designed to strengthen the nation’s response to tick-borne disease. These included the Kay Hagan Tick Act Reauthorization Act, the Alpha-gal Allergen Inclusion Act, the Stamp Out Lyme Disease Act, the Tick Identification Program Act, and the LymeX Authorization Act. Together, these initiatives aim to improve surveillance, research funding, education, and patient support.

Encouragingly, the impact of sustained advocacy is already visible. Federal funding for tick-borne disease research and response has increased significantly, rising from $59 million in fiscal year 2020 to $169.5 million in fiscal year 2026. This progress signals that policymakers are beginning to recognize the scale and urgency of this growing public health issue.

Participating in this national advocacy effort was both inspiring and empowering. There is something powerful about joining voices with hundreds of others who share a common mission. The solidarity, passion, and determination present throughout the day reinforced an important truth: when people come together and speak up, meaningful change becomes possible.

I encourage others to consider participating in this event in the future. You do not need to be an expert in policy or legislation to make a difference. Advocacy begins with caring and being willing to share your personal experience. Every story helps build the collective voice pushing for greater awareness, better care, and stronger support for those affected by tick-borne illness.

There is truly power in numbers, and together we can continue moving this important work forward.