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About the Lyme Disease Association
- An all-volunteer national nonprofit, 501
(c)(3), dedicated to Lyme disease education, prevention, raising monies for
research, and patient support.
- Provides 98% of raised funds to
programs (no employees, no office overhead).
- Presents fully accredited medical
- Funds research nationally, research
published in peer-review.
- Provides monies for children without
insurance coverage for Lyme disease through LymeAid 4 Kids.
- Provides free literature, free information
line, free doctor referrals.
- Has affiliates, chapters, partners,
Click on any picture to enlarge
The Lyme Disease Association (LDA), an organization which expanded its focus nationally about 7 years ago, is dedicated to Lyme disease education, prevention, and raising research dollars. About ninety-six cents of every dollar raised by the Lyme Disease Association has been used on programs. In its search for a cure for chronic Lyme, the LDA has already funded dozens of research projects coast to coast through researchers at institutions such as Columbia University College of Physicians & Surgeons, NJ Medical School (UMDNJ), Fox Chase Cancer Center, University of California, Davis, and University of Pennsylvania. Some of the research has been featured in peer-reviewed journals, such as Journal of the American Medical Association (JAMA), The Proceedings of the National Academy of Science, The Psychiatric Clinics of North America, Infection, Journal of Neuropsychiatry and Clinical Neurosciences, JSTBD, Journal of Clinical Microbiology, Journal of International Neuropsychological Society, and Infection and Immunology. Very significant genome work initially funded by LDA has shown that different strains of Borrelia have the ability to exchange genetic material among themselves, a trait greatly benefiting their survival and probably confounding the body’s ability to eradicate the organism.
To coordinate the effort against Lyme disease, the LDA became affiliated with several other organizations, including: Time for Lyme, Inc. (CT), California Lyme Disease Association, Inc. (CA), Lyme Disease Network of New Jersey, Inc. (NJ), Lyme Association of Greater Kansas City, Inc. (KS/MO), Lyme Disease Association of Southeastern Pennsylvania, Inc. (PA), Oregon Lyme Disease Network, Inc. (OR), and Texas Lyme Disease Association (TX). The LDA is also a coalition partner with Stop Ticks On People (NY) and Connecticut Lyme Disease Coalition (CT). LDA currently has Chapters in Pennsylvania, Delaware, Rhode Island, Virginia, New York, and Massachusetts and has a support program in Manhattan (NY). The LDA together with its affiliates have raised about $5 million to fight Lyme disease.
On October 20, 2006, the LDA is sponsoring its 7th Lyme & Other Tick-Borne Diseases fully accredited medical conference in Philadelphia, again with Columbia University. The LDA’s year 2000 conference was the first ever devoted to the problems of children with Lyme disease. In 2005, the LDA brought in 2 international experts to speak at the conference. LDA has videos available for sale from each of the conferences. LDA is a professional development provider for the State of New Jersey, and offers professional development hours on Lyme disease to teachers. It has in-serviced teachers and nurses in several states. Through its pamphlet titled The ABC’s of Lyme Disease─which is designed for parents and educators─the LDA assists the families of children who have been diagnosed with Lyme disease. The LDA’s LymeR Primer brochure is a compact document which lists symptoms, testing, tick pictures and information such as tick removal along with information on many other tick-borne diseases. LDA’s Tickmark (bookmark) shows tick pictures, diseases ticks carry, relative size, and proper removal. LDA published a book, Lyme Disease Update: Science, Policy & Law, by Marcus Cohen, which presents the peer reviewed science behind chronic Lyme disease in a concise format, along with the steps that have been taken by activists and governments across the country who are fighting the war against the most prevalent vector-borne disease in this country today─Lyme disease. In 2004, the LDA published Lyme Disease Is No Fun: Let's Get Well!, a book written especially for 8-12 year olds who have Lyme disease. It is written and edited by young women, Mary Wall and Colleen Smith, respectively, each of whom battled severe Lyme disease as a child, yet each is now a productive member of society.
LymeAid 4 Kids is an LDA fund that helps families who do not have insurance coverage for Lyme disease for their children. The fund was initiated in conjunction with internationally acclaimed author Amy Tan, who supports the fund. The LDA has given out $36,000 worth of grants to date through this program to help children in 12 states and Canada.
Time for Lyme, Inc. an LDA affiliate, worked with the Red Cross in Greenwich to develop a tick kit. The kits were developed into national tick kits which are now being sold nationally by the Red Cross (or through the LDA) and contain pointed tweezers and other paraphernalia helpful for tick removal. A card is included containing removal procedures and other facts along with LDA contact information.
The California Lyme Disease Association, Inc. an LDA affiliate, worked with LDA to develop and provide 2 free downloadable protection posters which can be used in schools and offices. It includes how to dress properly and how to remove ticks. LDA is now working with The Oregon Lyme Disease Network on a program which will provide information in the schools, including the LDA’s Let’s Get Well book. LDA also awarded several grants to its Kansas affiliate, Lyme Association of Greater Kansas City, Inc. toward its efforts to put Lyme literature in the schools in Missouri and Kansas. Additionally, it gave a grant for the Lyme Disease Association of Southeastern Pennsylvania to upgrade its Basics booklet, including physician review. LDA also provides grants to its Lyme Disease Network of NJ, Inc. affiliate to help maintain www.Lymenet.org and the LDA website, www.LymeDiseaseAssociation.org.
“Unfortunately, much more funding is needed for Lyme disease education and research, and we need a facility that concentrates its efforts on finding the answers to this Lyme enigma,” said Pat Smith, president of the LDA. To that end, the LDA and its affiliate, Time for Lyme (TFL) are creating an endowed Lyme Disease Research Center at Columbia University (Center). Brian Fallon, MD, associate professor of clinical psychiatry and director of the current Lyme Disease Program at New York Psychiatric Institute, will be the Center’s director. He is considered by many to be the leading expert on neuropsychiatric manifestations of Lyme disease. The LDA has funded some of his past research including the pilot study which provided him with data needed to obtain the $4.7 million grant from the National Institutes of Health (NIH) for studying the effects of long-term Lyme disease treatment using state-of-the-art brain imaging, which has just been completed. Preliminary reports indicate the long term treatment was beneficial.
Last Modified: November 14, 2009