NDRI Archives - Bay Area Lyme Foundation

“We Take Every Case Personally”: Understanding Lyme Disease Biobank’s Tissue Recovery Program

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way series

A behind-the-scenes look at how Wauchita Green and Pauline Lui help turn patients’ tissue donations into research that is changing the future of Lyme disease.

Lyme Disease Biobank, a program of Bay Area Lyme Foundation, partners with the National Disease Research Interchange (NDRI) to help advance Lyme disease research. Together, they enable patients to contribute tissue samples, collected during surgery or after death, which the Biobank shares with approved scientists studying infection and immune response. NDRI’s nationwide recovery network ensures these precious donations are handled with care and respect. This partnership helps turn patient generosity into real progress, accelerating the search for better diagnostics, treatments, and ultimately, a cure.

The Biobank also partners with MyLymeData, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation, if desired.

When families whose lives have been impacted by Lyme disease call to talk about donating tissue, they’re often overwhelmed. But thankfully, the NDRI private donor team is standing by 24/7/365 to help. Patients and families typically want to know:

“How much does this cost?”
“What actually happens?”
“Is this going to be complicated?”

Patient Participation is the Key to Research Gains

Biobank collection at Gordon Medical Associates

By Bay Area Lyme Foundation

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.

Bay Area Lyme Foundation Launches Ticktective™ Podcast

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Launches Ticktective™ Podcast

PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series. Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.

“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.

Lyme Biobanking & Lyme Diagnostics

By Bay Area Lyme Foundation

Liz Horn, PhD, MBI

Principal Investigator for the Bay Area Lyme Disease Biobank, Liz Horn, PhD, MBI, discusses the Biobank which has enrolled over 900 participants, supporting over 50 research projects so far. They support research projects across the nation by providing precious serum, whole blood, urine and tissue samples to researchers. Ticktective Video and Podcast Editor: Kiva Schweig.

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