When Focus on Lyme put out the call for volunteers willing to donate blood samples for research on Lyme disease, the entire day’s schedule was filled within minutes. Some participants, many quite ill, traveled hundreds of miles just to make a blood donation.
Focus On Lyme was formed in 2015 to address existing gaps in diagnostics, prevention, treatment and advocacy for Lyme and tick-borne disease sufferers. This April they are hosting a scientific conference, dinner reception, and the first patient forum to be held in Arizona, with several Lyme disease clinicians and researchers in attendance. FOL’s mission is to enable discovery of new diagnostic and treatment paradigms for Lyme and other tick-borne diseases, to help patients affected by these diseases achieve a higher quality of life and fewer long-term health challenges. For more information, visit: www.focusonlyme.org.
Participants came from all over the country to support Focus On Lyme, founded by Tammy Crawford, on a quest to improve research, diagnostics and treatment options for Lyme disease patients. A total of three blood donation clinics were held, each one filled with donors just trying to make a difference.
“I became frustrated because Lyme disease is not clearly understood as a disease, which means that treatments are often not covered by insurance,” Crawford explained, whose daughter Jessica became wheelchair bound after being infected with Lyme disease by a tick bite. “I was fortunate to be able to find appropriate care for my daughter, but millions cannot. That’s why I’ve decided to look to science to do better.”
Thanks to the support of people who have been afflicted with a tick-borne disease, Focus On Lyme now holds a biorepository of serum and whole blood samples from a wide range of donors, from a region which is highly endemic for several tick-borne diseases, including Lyme disease, Babesia, Anaplasma, Ehrlichia and Powassen virus.
The Translational Genomics Research Institute (TGen) was the first organization to utilize samples from the biorepository to investigate the feasibility of developing a genomics-based test for Borrelia species and co-transmitted pathogens.
“I was forced to resign from a job I loved because of my disabling Lyme disease symptoms,” said Holli Crear, a middle school teacher and one of hundreds of thousands of people who struggle daily with debilitating symptoms of Lyme disease. “I donated my blood because I feel forgotten by medical science — they can’t explain why I continue to be sick because there’s no research being done on people like me.” The Focus on Lyme Biorepository holds samples from this forgotten patient population and hopes to make them available to advance scientific understanding of chronic Lyme disease and post-treatment Lyme disease syndrome.
A recent publication from John Hopkins University showed that “Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection,” according to John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.
Each sample was tested at a CLIA-certified laboratory using the standard two-tier serological protocol specified by the CDC as the current diagnostic standard for Lyme disease (ELISA and Western Blot, both IgG and IgM). Each donor also completed an extensive questionnaire which included questions about known tick-bites, previous diagnoses including tick-borne diseases, and signs and symptoms at the time of blood donation.
For more information visit focusonlyme.org/biorepository
###
Media Contact:
Jessica Crawford