Liz Horn: The Lyme Disease Biobank That Could Change Everything

By Bay Area Lyme Foundation

Liz Horn, PhD, MBI

Liz Horn, PhD, MBI, serves as Principal Investigator of Lyme Disease Biobank, a resource that provides much-needed blood, urine, and tissue samples to researchers studying Lyme disease and other tick-borne infections. She has spent more than 2 decades working with non-profit organizations to build research initiatives and collaborations with academia, other non-profits, and industry. Since 2020, she has served as a scientific advisor for the LymeX Diagnostics Prize, a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Liz is passionate about building resources to move research forward that help people, improve lives, and reduce suffering. She earned her doctorate in molecular pharmacology and cancer therapeutics from SUNY at Buffalo, was a National Library of Medicine fellow in biomedical informatics, and received her MBI from Oregon Health & Science University.

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Unlocking the Mysteries of Tick-borne Infections: Lyme Disease Biobank’s Tissue Collection Program Drives Research Momentum

Kirsten Stein and the Lyme Disease Biobank
By Bay Area Lyme Foundation

BAL Leading the Way Series

 

“My family knows that after I die, my tissues will be donated to Lyme Disease Biobank to provide researchers with the vital material they need to solve this horrible disease. I urge anyone with chronic/persistent Lyme to register with NDRI today. Let’s end this suffering together.” 

-Kirsten Stein, Lyme Advocate

Lyme Disease Biobank®, led by Liz Horn, PhD, MBI, is central to Bay Area Lyme Foundation’s 10-year search for answers to Lyme’s most intractable questions and is the most important program in the Foundation’s mission to make Lyme disease easy to diagnose and simple to cure. 

The original Lyme Disease Biobank sample collection launched in 2014 focused on obtaining blood, urine, and serum samples from patients with early/acute Lyme disease. Once this program had been fully established, the Lyme Disease Biobank team explored adding tissue samples to the Biobank. Tissue samples could help researchers expand their investigations beyond the early stage of infection into how chronic/persistent Lyme and other tick-borne diseases impact the central nervous system, joints, and organs of Lyme patients. 

With the tissue bank objectives defined, the Biobank connected with specialist organizations to provide the critical support needed to support sample collection and make the development of a tissue bank a reality.

Post-Mortem Tissue Collection Planning

NDRILyme Disease Biobank established a key partnership with the nonprofit National Disease Research Interchange (NDRI) to provide logistics for post-mortem tissue collection for the new tissue program. The Biobank also partnered with MyLymeData.org, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation if desired. Bringing these two resources together provides for the organizing and recovery of post-mortem (after death) tissue. It ensures samples include redacted (removes identifying information) detailed patient medical histories—an important nuance for Lyme disease researchers. 

“Although it is an emotional and difficult idea for anyone to plan to donate parts of their body to science after they have died, we believe that this decision is an important way for Lyme patients to change the course of Lyme disease research. Having access to tissues from the brain, heart, joints, and central nervous system of Lyme patients allows researchers to prove unequivocally that Lyme is present in tissue and contributes to patient suffering,” explains Linda Giampa, Executive Director, Bay Area Lyme Foundation and board member of Lyme Disease Biobank.