I have been wondering lately if it’s just my imagination or if Lyme research and awareness are finally getting traction. Because funding has been pretty dismal historically. But we might just be getting there at last.
The latest good news is a big grant to Johns Hopkins researchers: $10 million from the Cohen Foundation will go to three Lyme research teams led by John Aucott, M.D.; Ying Zhang, M.D., Ph.D.; and Brian Schwartz, M.D. Every one of those ten million dollars will go for critical areas of study. (For a list of some fabulous organizations supporting funding to many research projects at many institutions, see the end of this post).
Alcott has been studying the debilitating symptoms of Lyme for a decade. Last year he became director of the new Johns Hopkins Lyme Disease Research Center, focused on what they call Post-Lyme Disease Syndrome. (Dr. Aucott sees patients upon referral from their primary physicians. Learn more here.) Whatever they confirm as the exact cause, that’s what I and many of my friends have got—so of course I’m keenly interested.
What are the symptoms? They can include extreme fatigue; musculoskeletal pain; arthritis-like pain in the joints; and cognitive, neurological, and cardiac symptoms.
With the new grant from the Cohen Foundation, Dr. Aucott plans to open a new research center each year for three years, adding Johns Hopkins Bayview Medical Center and a site in Howard County, Maryland, to the current Green Spring Station facility in Lutherville, Maryland. He foresees expanding on to other sites along the East Coast after that.
“As Lyme cases continue to increase in the U.S., there is an increasing need to understand the disease and its outcomes,” says Aucott. “We have no way of predicting who will recover and who won’t.
This grant will allow us to explore why post-treatment Lyme disease syndrome exists, the mechanisms behind the disease and the pathways through which it causes symptoms so that one day, we can use that information to develop ways to prevent the disease or develop more effective drugs. Currently, we don’t have a full understanding of the disease or the most effective ways to treat those it impacts.”
He and his colleague Joel Dudley, Ph.D., professor of medicine, will use their share of the grant for detailed clinical, immunological, and molecular profiling.
Teaming up with them is Joel Dudley, Ph.D., assistant professor of genetics and genomic sciences and director of biomedical informatics at the Icahn School of Medicine at Mount Sinai in New York City.
What powerhouse credentials. And there’s more work coming out of this grant.
Dr. Zhang, professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health, will continue his work to find the best drug combinations for successful Lyme treatment.
Dr. Schwartz, professor in the Department of Environmental Health and Engineering at the School of Public Health, will work with data from 500,000 Lyme patients in Pennsylvania. I’m not aware of anything like this project, which will explore many facets of how Lyme impacts patients, risk factors, and basic Lyme awareness.
I’m most interested in the patterns his team will be looking for with regard to treatment response. So far, no one treatment works the same for everyone. Why is that? What threads will they find to inform better treatment?
Now, all this adds up to a lot of brain power at Johns Hopkins working to get to the heart of the illness in ways both broad and deep. And many other dedicated researchers are doing and have done important work. But funding is still far too low for such a wide reaching public health crisis. I don’t know about you, but I meet people all the time who are touched in some way by this illness. The numbers astound me.
With more funders coming forward, perhaps we’ll finally reach the scale of research necessary to find a cure. The untold thousands upon thousands suffering from the tragedy of persistent Lyme disease deserve nothing less.
Check out these organizations to to learn more about research, funding, participation in studies, and more—including where you can donate Feel free to add more in the comments section.
the Global Lyme Alliance
Lyme Disease Association (LDA)
Lyme Research Alliance
Bay Area Lyme Foundation