Lyme Disease Association, Inc.

The Lyme Disease Association, Inc.'s (LDA) ultimate goals are to find a cure for Lyme and other tick-borne diseases (TBD) and help to stop the spread of these diseases. In order to accomplish these goals, LDA works to help doctors, researchers, government officials, patients, corporate officials, and the general public. Doctors need to be educated on tick-borne diseases and need a climate which will allow them to practice using clinical judgment. Education will help them diagnose expediently and provide safe, effective treatment based upon individual patient needs. Researchers require funds to help them to pursue projects which will understand the Borrelia bacteria that cause Lyme, its strain variations, how and where it may remain in the body after treatment, what tests can detect it and detect active infection, and how it can be treated. They also need to pursue projects which will identify types of ticks and what strains of the Lyme disease bacteria and other diseases they carry, where they are found, and how can disease transmission be prevented. Government officials need to understand that Lyme disease is a growing problem which is being complicated by lack of knowledge and also by emerging tick-borne pathogens which cloud diagnostic and treatment picture. They need to be able to initiate and pass legislation necessary to fund appropriate research and also to oversee a planned federal strategy to address tick-borne diseases. State and local officials need to develop laws which will protect physicians treating tick-borne diseases from bias resulting from lack of education about the diseases and pass legislation which protects patients from abuses resulting from inaccurate information on testing, diagnosis, treatment, and helping them to get coverage for diagnosis and treatment. Patients with tick-borne diseases (TBD) need not only monetary resources to receive treatment but also need access to the most current information on tick-borne diseases and on physicians who are willing to treat these complex conditions and on other health care providers and professionals who can help them and their families cope with TBD. Corporations need education on TBDs, especially those who have employees at high risk such as park officials, utilities, loggers, farm workers, etc. They need to provide employees with safety information on how to avoid ticks, remove them, and steps to take for proper diagnosis and treatment. This affects employee lives and also the company's bottom line, since absences and insurance issues raise the cost to them and to consumers. The general public requires more awareness about the dangers of tick-borne diseases, where ticks are most abundant, how they feed, how best to remove them to prevent increasing risk of infection, how to protect themselves against ticks both from a personal and a property perspective.

Enhance the capability and productivity of TBD researchers: Write for grants & hold fundraisers for research. Develop direct mail campaign for funding. Solicit Request for Proposals & award grants for TBDs, esp. chronic Lyme. Utilize celebrity spokespeople in national fundraising campaigns. Provide input into & promote legislation to fund research. Facilitate communications among physicians & researchers worldwide: keep database upgraded, provide networking opportunities. Reduce the spread of Lyme & other TBDs throughout general population: Provide public forums to present Lyme experts & participate as a speaker Participate in health fairs. Produce website educational videos. Update/reprint pamphlets for free distribution. Maintain toll-free info line. Maintain website & links to other sites. Develop/promote legislative efforts to reduce spread of Lyme. Provide free website literature in Spanish. Elicit cooperation w. government agencies who share same goal. Reduce the spread of Lyme/TBDs in children: Participate in school in-services on Lyme for educators/nurses. Distribute free ABC's of Lyme Disease pamphlet for parents & educators. Publicize How A Tick Can Make You Sick Ppt.web module for schools used free from site. Raise/distribute funds for kids w/o insurance through LymeAid 4 Kids Speak at conferences on children w. Lyme. Support children's education materials & forums by others, including $$ support. Provide input into & promote legislation to reduce spread of TBDs in kids. Educate doctors about TBDs. Host medical conferences w. CME credits for doctors and grand rounds. Provide free brochures to doctors for them to distribute Work w. physician groups who share common interest to stop spread of TBDs. Create case & incidence maps for website publication using CDC numbers: 1990-present. Facilitate Lyme disease patient wellness: Maintain toll free line for automated Lyme information & free doctor referral online. Refer patients to other Lyme-related services. Educate patients about TBD's dangers. Improve cooperation w. public officials on TBD strategies. Invite health officials to LDA medical conferences as speakers. Speak at health department and other official Lyme disease forums. Provide doctors as speakers for public official forums. Maintain a current data base of physician and researcher contact information. Provide input into and promote legislative efforts to fund TBD research. Attend or arrange speakers for government conferences on TBDs. Integrate other groups into LDA nationwide effort: Speak at forums sponsored by other groups. Support other groups' educational activities with materials, publicity, LDA personnel, and monetarily when possible Increase nationwide travel for improved relationships. Add additional affiliates, chapters, supporters when feasible (40+ currently). Hold annual LDA chapter, affiliate, supporter meeting.

The Lyme Disease Association, Inc. (LDA) functions in a unique manner as it is run by all volunteers. Almost all of the people involved in the organization are patients or families of patients. Thus, the volunteers for the organization are self motivated and those involved have backgrounds across the board from those in the financial field to doctors, nurses, scientists, lawyers, outdoor workers such as park rangers and utility workers, educators, public relations, graphic design to college students. Many have full time or part time jobs already; some are retired or have not entered the work force. This is a strength as they bring many different perspectives to the problems faced by a non-profit competing for funding for a disease that is most often underfunded by government and pharmaceuticals. Additionally, the wide array of individuals bring with them connections to areas which are needed to network including: universities, government, financial institutions, corporations, and health care entities, other organizations working for similar goals. Additionally, because LDA has no paid employees and little to no overhead, it is able to take the financial resources it raises and put approximately 97% directly to its programs. LDA has formed networks with the Environmental Protection Agency (EPA) through its Pesticide Environmental Stewardship Program (PESP). The purpose of the program is to reduce ticks through means other than pesticides when possible. The LDA has already provided their employees with an educational program on tick-borne diseases, helped organize a network on tick-borne diseases with government and private partners, and helped organize a prevention conference with EPA, and entered into a publication with them on kids in the schools. LDA has also held many meetings with the Centers for Disease Control & Prevention and co-chaired an EPA prevention conference session with them in 2010. Additionally, LDA is now part of a group of Lyme organization leaders working with CDC to resolve some of the areas which have caused problems for patients and physicians in the diagnosis and treatment of Lyme disease, a group which just met at CDC's Ft. Collins Vector-Borne Diseases Branch. The LDA also developed an umbrella organization which is a partnership of over 40 organizations who are working across the country to stop the spread of tick-borne diseases using combined strategies, resources, and programs. The LDA also has a seat on the Columbia University Lyme & Tick-Borne Diseases Research Center advisory board in New York. LDA has also partnered with Rotary International to produce tick identification cards which it distributes through volunteers nationwide.

The Lyme Disease Association, Inc. (LDA) partnered to open an endowed research center at Columbia University, NY, the first to focus on chronic Lyme. LDA then funded the establishment of a sample bank there to store patient samples which are now shipped to other researchers. LDA funded a project with seed monies which were then enhanced by NIH funding to map the genome of a number of different strains of the Borrelia bacteria. That led to sequencing of 17 strains, information which can be useful for diagnosis, treatment, and vaccines. The LDA also supplied funding for a pilot project at Columbia University which produced data to apply for $4.7M from the National Institutes of Health for a long term treatment study which when published, showed there were some benefits of long term treatment. The LDA funded recently published study looking at patients with lone star tick bites. The discovery of Lyme bacteria & other strains in the ticks and patients is important in determining how Lyme may be vectored in the South. To date, the consensus is that only deer ticks transmit the Lyme causing bacteria, and Lyme does not exist in the South. This work joins others in challenging that theory. The LDA has provided 168.75+ continuing medical education credits for doctors through conferences. Researcher attendees have had side meetings there and have formed collaborations to produce new research, since they often require clinicians in their projects. LDA has also helped bring patients together with researchers for particular research projects through internet postings for particular studies. The LDA has published several books including one for children 8-12 with Lyme and has produced a prevention PowerPoint for direct use from computer to the classroom, collaborated on a prevention video for kids hosted on its website and has given close to $¼ million to children without insurance. Educational grants have been provided to dozens of organizations for educational programs and efforts around the country, especially in the schools. Educational activities have led to partnerships which have contributed to increased federal funding for Lyme disease research and pending legislation to establish a federal task force to coordinate tick-borne disease work at the national level. LDA has worked with government agencies to produce Lyme conferences and meetings where unresolved issues which surround Lyme can be addressed in a transparent reasonable atmosphere. LDA testified twice on Lyme before House Subcommittees about the problems facing Lyme patients. LDA has been invited before state legislators, health commissioners and others to educate state officials across the country on the need for specific legislative remedies to address the needs of Lyme patients and physicians, many such pieces having been signed into law. In 2016, a bill federal was signed into law creating a federal tick-borne diseases working group. LDA directly negotiated the language passed into law.