Patient Participation is the Key to Research Gains

BAL Leading the Way Series

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.”  –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.”  – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, CA. Persistent/chronic Lyme patients traveled from as far away as Sacramento, CA, and Reno, NV, to donate blood and urine samples to the Biobank. LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Since its inception in 2014, LDB has collected over 1,000 patient samples for the Biobank, and it supports 70+ projects around the United States. The program collects blood and urine from people who have been diagnosed with acute or persistent/chronic Lyme disease. LDB, led by Principal Investigator Liz Horn, PhD, MBI, has partnered with GMA since 2019 to collect samples from patients with persistent/chronic Lyme.

In 2018, the LDB launched its tissue collection program. Lyme patients who have upcoming surgeries may elect to have tissue that would otherwise be discarded collected and stored in the Biobank. This program is administered by the National Disease Research Interchange (NDRI) which also manages post-mortem donations to the Biobank. Our partner, MyLymeData, helps generate awareness about the tissue collection program and provides additional information about the tissue samples to researchers using the samples. 

“As a doctor and as someone who treats Lyme patients, I feel it’s my duty to support finding better diagnostics and treatments for Lyme patients. Lyme is an underfunded and under-researched aspect of chronic illness, and we need all the help we can get.” – Natalie P., ND, LDB participant

“We are extremely grateful to everyone who has donated samples to the Biobank so far. Patients are the key to finding answers to the challenges of Lyme disease—we could not have made such important research gains without your commitment to the cause. We humbly thank you for your participation!” – Linda Giampa, Executive Director, Bay Area Lyme Foundation

Read more about Lyme Disease Biobank and how to get involved by visiting our website

Learn how to participate in future sample collections in San Rafael.

“I hope my participation in the Biobank will lead to a greater understanding of persistent/chronic Lyme disease and that better diagnostics and treatments will be developed from this program. One doctor told me that Lyme was a ‘hippie doctor disease.’ It’s not. Lyme is a true epidemic that must be addressed.

Upon walking out into the parking lot, I found I was emotional: I felt like I was going to burst into tears. Someone was listening! I felt I had been heard with compassion and empathy. Thank you!”  – Sarah R., LDB participant