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Time for a change: Organization changes its name to Lyme Research Alliance to reflect mission
Updated 11:25 a.m., Friday, May 18, 2012
Time for Lyme, Inc., a non-profit organization that was started by Greenwich residents and raises research funds to fight Lyme and tick-borne diseases, has changed its name to Lyme Research Alliance, Inc. (LRA).
"We fund ground-breaking research in the field of tick-borne disease, and our new name better reflects what we do," said Greenwich resident Diane Blanchard, a co-founder and co-president of the organization.
The group has aggressively built partnerships with a significant range of scientists, researchers and other groups focused on combating Lyme and tick-borne disease.
The heightened risk of Lyme disease due to the warm spring in the Northeast, overlaid on the momentum of the Lyme epidemic which The Centers For Disease Control has said is already larger than AIDS, West Nile and Avian Flu combined, throws a spotlight on the need for faster progress in combating the disease. In the northeast some researchers state that more than 70 percent of deer ticks sampled are infected with the Lyme bacterium. "We believe that by harnessing the power of our growing affiliations, we will facilitate research that leads to breakthroughs in prevention strategies, diagnosis, treatments, and ultimately a cure for Lyme," said Dr. Harriet Kotsoris, chief scientific officer of LRA. Our research grants are driving the science behind putting an end to Lyme. We will also continue to work through our partners as an advocate for Lyme disease sufferers and their families by supporting legislative reform on the federal, state and local levels."
Over the years, LRA has formally affiliated with the Lyme Disease Association, Inc. (LDA), and has built strong working relationships with organizations including LymeDisease.org (formerly CALDA) and regional organizations. Significant partnerships have also been forged with the academic community to support scientific research that can ultimately alleviate the threat of Lyme and other tick-borne diseases. Most notably, the organization partnered with the Lyme Disease Association to fund and create the first research center for the study of persistent Lyme at Columbia University Medical Center in New York City in 2007. For the past decade the LRA has also funded innovative research at universities across the United States, including SUNY Stony Brook, Johns Hopkins, Washington University and Texas A&M and more.
LRA-supported researchers within the past year have published important discoveries on the diagnosis and treatment of persistent Lyme disease, raising hopes for new tools to combat this epidemic:
Dr. Karen Newell-Rogers of Texas A&M Health Science Center in March 2012 announced a preliminary investigational new drug filing with the FDA for what promises to be the first new drug candidate ever to target persistent Lyme disease.
Steven Schutzer, M.D., a physician-scientist and Professor of Medicine at the University of Medicine and Dentistry of New Jersey has for the first time characterized post-treatment Lyme disease in the laboratory based on unique proteins found in the spinal fluid of patients complaining of post-treatment Lyme symptoms, and differentiating Lyme in the laboratory from chronic fatigue syndrome, a common misdiagnosis.
Dr. Benjamin Luft, who leads a team that is assessing diagnostic tests for Lyme -- which have a high rate of false positive and negative results -- recently was awarded a grant by LRA, raising hope for new progress on the diagnostic front. Dr. Luft, the Edmond Pellegrino Professor of Medicine at The State University of New York, Stony Brook, is renowned for his many earlier studies of Lyme disease.
"LRA has grown from a grass roots neighborhood organization in Greenwich to a respected non-profit funding Lyme disease research at leading medical research centers around the country," says Greenwich resident Debbie Siciliano, co-president of the organization. "The renaming comes at a time when it's more urgent than ever for us to continue building strong alliances to support independent research leading to a reliable diagnostic test and ultimate cure for persistent Lyme, one of the most serious epidemics of our time."
Lyme disease (named after the town of Lyme, where a number of cases were identified in 1975) is a complex multi-system infectious disease triggered by the corkscrew-shaped bacterium called Borrelia burgdorferi (or Bb) that is transmitted primarily through tick bites. Since Bb are difficult to isolate and grow, scientists have found them challenging to study in the laboratory. In addition, there are more than 100 strains in the US of Bb and 300 strains worldwide. The wide variety of strains is believed to contribute to its ability to evade the immune system and antibiotic therapy, which may lead to a chronic debilitating infection.
While evidence of a tick bite often appears as a bull's-eye shaped rash, fewer than 50 percent of patients with Lyme disease recall such a rash. When treated in a timely fashion cases are resolved with antibiotics. However, if not treated in time or co-infected with other increasingly virulent tick-borne diseases, such as ehrlichiosis or babesiosis, the disease can affect every major organ system in the body and persist despite antibiotic therapy.
It can be misdiagnosed as fibromyalgia, arthritis, multiple sclerosis, chronic fatigue, Bell's palsy, auto-immune disease, ALS or other dysfunction. In severe cases, it can be fatal.
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For more information on Lyme Research Alliance visit http://www.lymeresearchalliance.org.