A Day of Unity and Action in Washington, D.C.: Reflections from GLA's Vice Chair

GLA Vice Chair, Debbie Siciliano, reflects on a transformative day in Washington, D.C., uniting advocates, researchers, and leaders to confront the realities of Lyme disease and demand progress.

As I sat in the room, preparing to watch The Quiet Epidemic, Christopher Meloni’s words struck me deeply: “They knew. They knew!” His statement, drawn from the documentary’s revelations, exposed the profound injustice the Lyme community has endured for decades. Some influential figures in government and the research community once recognized the chronic and devastating nature of Lyme disease, but in the 1990s, the narrative shifted, leaving countless patients and families to suffer in silence. Why was this truth ignored? These are questions we must answer—and address—to create real progress and justice.

Meloni’s conviction captured the dual battle we face: fighting the disease itself and overcoming the systemic denial of its reality. His words weren’t just an indictment of the past—they were a rallying cry. Enough of the dismissals, the inaction, and the suffering. His statement set the tone for the day and fueled a shared determination to move forward.

It was an honor to be among so many individuals dedicated to uncovering the truth and finding solutions for a crisis that has devastated countless families. The shared energy in the room reflected a long-overdue force for change. The Quiet Epidemic, a powerful and unifying documentary, brought us together. Directed by Lindsay Keys and Winslow Crane-Murdoch, it highlighted the uphill battle for recognition, care, and dignity that patients, especially children, face within broken systems—from the medical establishment to government agencies. This film provided a shared platform for unity, allowing us to strengthen collaboration while continuing our vital individual missions.

GLA’s leadership in this fight has been transformative. Through precious donor dollars, GLA is leading the way by funding groundbreaking research that advances us toward a cure. Initiatives like Hygromycin A, novel therapies for Babesia, the Bartonella Discovery Project, and defining chronic Lyme disease are pivotal steps in combating these devastating illnesses. With over $20 million invested, GLA has also established the first academic research center for chronic Lyme disease and tick-borne diseases at Columbia University Irving Medical Center, solidifying its role as a leader in the movement.

Working alongside organizations, advocates, and leaders like Senator Richard Blumenthal and Representative Chris Smith, GLA is helping to build the tidal wave of change that Dr. Kenneth Liegner envisioned. The collaboration and collective determination within the Lyme community were on full display, and the unity in that room underscored the power of working together toward a shared goal.

 Now is the time for action. Contact your congressional representatives and share your Lyme story to ensure your voice is heard. Advocate for critical legislation, like the renewal of the Kay Hagan Tick Act, to support prevention and research. Become involved with GLA or the other TQE documentary sponsors by supporting their initiatives. Share The Quiet Epidemic widely to amplify awareness and bring the reality of Lyme disease into the public eye. Together, we can demand change.  

The fight is far from over, but the unity in that room filled me with hope. Every precious donor dollar, every researcher’s breakthrough, and every advocate’s voice bring us closer to a future where no one suffers in silence. Chronic Lyme disease is real, and its suffering must end. Together, patients, researchers, and advocates can drive progress and end the injustice of Lyme disease. Enough is enough. Together, we will win this fight. 

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