A June 2013 National Institutes of Standards and Technology (NIST) survey indicated that 84% of Lyme research scientists could not access the samples they need (blood tissue, saliva, etc.) and 96% believed there was a critical need for a centralized biorepository. In response to this identified need, the National Lyme Biobank is a multiyear initiative launched in 2014 with a pilot study in an endemic area, collecting whole blood and serum samples from individuals with suspected acute Lyme disease and unaffected individuals (controls). Through four seasons of collection, ~450 participants have been enrolled at sites on the East Coast, Upper Midwest, and Bay Area, California. Detailed clinical information and testing data are collected to better characterize the samples. Each participant’s donation provides samples for ~50 research projects, with aliquots of whole blood (1 and 2 ml), serum (250 μl), and urine (1 ml). Several larger aliquots (5 ml) are also available.
The Lyme Disease Biobank is a:
- Network of regional collection centers from endemic regions across the country
- Central laboratory that handles all processing and storage
- Consistent set of stringent protocols, validation, and testing
- Bay Area Lyme Foundation-supported organization with strong independent leadership and the oversight of a clinical advisory committee to ensure the appropriate rigor and methods
- Substantially increases the amount and diversity of biospecimens available
- Includes well-annotated clinical data and longitudinal samples
- Enables follow-up and regular contact with consenting participants for further clinical assessment
- Provides standardized and transparent access for qualifying projects
- Creates standard vocabulary and lexicon to help build consensus and move the field forward
- Facilitates interaction and collaborations between researchers, leading to more research innovation and medical breakthroughs
The Lyme Disease Biobank Foundation is an independent 501c3 organization. Our board is comprised of individuals from the Bay Area Lyme Foundation who provide management and guidance to the biobank. Oversight of the biobank is by a clinical advisory committee to ensure the highest possible ethical standards.
As Executive Director, Bay Area Lyme Foundation, a non-profit dedicated to making Lyme disease easy to diagnose and simple to cure through research funding and awareness efforts. Drawing on the skills and know-how developed in the high-tech industry, Linda has brought the practice of responsibility and accountability to the foundation and its donors. Since joining, Linda has more than quadrupled the organization’s research funding. Before devoting herself to philanthropy, Linda spent 25 years in high tech, beginning with eight years at Oracle, followed by executive leadership positions, including CEO, in a number of successful software start-up companies. Those companies include Pure Software (IBM), Optimal Networks (Compuware), Ejasent (Symantec) and Versata.
Bonnie Crater, Co-Founder of Bay Area Lyme, chairs the Science Committee which drives our research agenda, champions innovation, and seeks partners to chart new paths in Lyme research. She brings her background in biology, extensive experience in Silicon Valley, boundless energy, and an entrepreneurial spirit to Bay Area Lyme Foundation. Bonnie is currently President and CEO at Full Circle Insights, and a ten-year veteran of Oracle Corporation and its various subsidiaries. She has held senior executive positions at companies like Zelerate, VoiceObjects, Realization, Genesys, Netscape, Network Computer Inc., Salesforce.com, and Stratify. She currently serves on the board of the CB Wellness Foundation, the Horse Park at Woodside and on the Town of Portola Valley’s Nature and Science Committee. Ms. Crater holds an AB in Biology from Princeton University.
Wendy Adams, Research Grant Director
Wendy Adams provides strategic research advice and helps identify, vet, and manage our research opportunities. She is Research Grant Director and Advisory Board Member at Bay Area Lyme Foundation. Her unique perspective and knowledge as a Lyme patient—as well as her background in finance and business development for companies like Cowen & Company, Aviron and Affymax—make her a great addition to Bay Area Lyme Foundation. Wendy runs B2DC LLC, a business development consultancy to biotech clients in infectious and autoimmune disease, respiratory disease, oncology, drug delivery and neurology. Previously, Wendy served as Vice President of Business Development at Principia Biopharma, a drug development company focused on cancer and autoimmune disease. Wendy holds an MBA from the Haas School of Business, University of California at Berkeley, where she also served on the faculty in Entrepreneurship, and an AB in Comparative Area Studies from Duke University.
Liz Horn, PhD, MBI
Liz has spent more than a decade building research initiatives and collaborations with non-profit organizations, with a focus on registries and biobanks. She has been working in Lyme disease since 2013 and was part of the team that launched the Lyme Disease Biobank. Liz 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 M.B.I. from Oregon Health & Science University. She has mentored and trained >75 advocacy organizations in the translational research enterprise, and helped these groups initiate collaborations with academia, other non-profits, and industry.