NATIONAL LYME CLINICAL TRIALS NETWORK GAINS ITS FIRST WEST COAST CENTER, THANKS TO $1M+ DONATION FROM BAY AREA LYME FOUNDATION
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National Lyme Clinical Trials Network Gains Its First West Coast Center, Thanks to $1M+ Donation from Bay Area Lyme Foundation
The University of California San Francisco Lyme Clinical Trials Center will support innovative clinical trials to develop treatments for patients with persistent Lyme disease
PORTOLA VALLEY, Calif., March 09, 2023 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces it has awarded more than $1M to the University of California San Francisco (UCSF) for the development of a Lyme Clinical Trials Center. This new center will become the first West Coast site of the Lyme Clinical Trials Network. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase.
“The founding of the UCSF Lyme Clinical Trials Center provides a unique opportunity for Lyme patients to participate in the next generation of therapeutic trials to combat this devastating disease,” said Charles Chiu, MD, PhD, of the University of California San Francisco who will lead the UCSF Lyme Clinical Trials Center. “Very few clinical trials have been initiated to investigate therapeutic solutions to address persistent symptoms of Lyme disease, and we hope to change this.”
UCSF will join the Lyme Clinical Trials Network led by Columbia University, which includes Children’s National Hospital (part of the National Institutes of Health), and Johns Hopkins University. This important effort is funded by the Steven & Alexandra Cohen Foundation.
“Bringing together these leading institutions from both coasts will enable collaboration that could accelerate the development of new treatments for patients with persistent Lyme disease, who currently have few options,” said Linda Giampa, executive director of the Bay Area Lyme Foundation. “Despite California having a great variety of tick-borne pathogens and having cases of Lyme as far back as the 1970s, patients who acquire these diseases in California have been underrepresented in research. We’re excited to have a unified network that can take into account the diversity of bacteria across geographies as these teams work together to tackle the lack of effective treatments for Lyme.”
Clinical symptoms may vary by region due to differences in tick-borne bacterial species and strains, making timely diagnosis and treatment extremely difficult. The creation of the UCSF Lyme Clinical Trials Center provides research and clinical scaffolding to help address these regional differences, with the hope of making treatment more effective, particularly for persistent disease.
“The Lyme Clinical Trials Network was created to help bring treatments and hope to Lyme disease patients and their families,” said Alexandra Cohen, president of the Steven & Alexandra Cohen Foundation. “We look forward to the continued growth of the Network and are excited to have UCSF join as the first West Coast site.”
Dr. Chiu will be overseeing the UCSF Lyme Clinical Trials Center, and its protocol development and grant writing. His team will be evaluating and treating patients for case registry and pilot studies, and publishing in conjunction with other Lyme Clinical Trials Network sites.
About Lyme disease
The most common vector-borne infectious disease in the US, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets, and/or potentially passed from a pregnant mother to her unborn baby. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and inaccurate diagnostic tests. There are more than 500,000 new cases of Lyme disease each year, according to statistics released in 2018 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, up to two million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.
About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM FUND covers overhead costs and allows for 100% of all donor contributions to the Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.
About the Steven & Alexandra Cohen Foundation
The Steven & Alexandra Cohen Foundation is committed to inspiring philanthropy and community service. They do this by creating awareness, offering guidance, and leading by example to show the world what giving can do. Their grants support public 501(c)3 nonprofit organizations based in the United States that either help people in need or solve complex problems. They also spearhead grassroots campaigns to encourage others to give.
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It remains to be seen just how “unified” this network of collaborators will be. So far, I’ve not been impressed with what’s come out of Columbia (other than the recognition that Lyme/MSIDS can cause all sorts of cognitive and psychiatric issues), the NIH, or Johns Hopkins University, as ALL of them have utilized the faulty and misleading PTLDS moniker, which essentially ignores persistent infection. A recent 2021 paper co-authored by 31 researchers from 19 separate institutions includes many of these researchers from these institutions listed in this collaboration, and while persistent infection is mentioned, the emphasis is always on three things: the acute phase, PTLDS, and a new Lyme vaccine. The myopic focus is so predictable you could write the script personally.