List of LDA Newsletters

 

The LDA has an ongoing commitment to helping its associated groups with Lyme programs. Here is a picture resulting from the first award given by the LDA to Lyme Association of Greater Kansas City, an LDA affiliate in 2003. The grant was for their “Tick-Borne Disease Awareness by Education” project providing information packets to school nurses in Kansas and Missouri. LDA has continued to fund the project.

LymeAid4Kids Logo2014SmallAre you under 21 and without medical insurance coverage for Lyme disease?   Do you think you may have Lyme disease?  If you answered yes to both these questions, the Lyme Disease Association’s LymeAid 4 Kids fund may help you.

• It can provide up to $1,000 toward diagnosis and treatment 

• It is available through any treating physician nationwide 
• It is simple to apply for

For further information check with your physician or refer to the application packet.

Now Accepting Applications for 2018 

2012-ColumbiaTeamColumbia Research TeamSince the LDA officially opened its doors in 1992, it has awarded 112 research grants from coast to coast. The Lyme Disease Association is one of the largest sources of private, nonprofit tick-bone diseases research funding in the United States. We strive to fund the most relevant research and cutting edge research aimed at investigating the prevention and treatment of tick-borne diseases. We choose projects led by top scientists who are able to publish in peer review to move the field forward.

LDA in partnership with an affiliate endowed the first center in the world to study chronic Lyme disease, which opened at Columbia University in 2007. The Center brings together researchers from various disciplines and from around the US.

To help increase awareness and education throughout the country, the LDA believes it is essential to work with and assist other Lyme organizations. Since 1999 we have awarded 127 educational grants to groups from across the country and some to universities. A majority of the grants were used for the following: Publications (Lyme Times, The Basics, TX Lyme Disease brochure, a tick-borne disease textbook), school Curriculum project, Lyme disease websites, distribution of materials to School Nurses, host various educational projects in schools, support medical conferences including several offering CME awards, sponsor physicians for CME medical conferences, sponsor Lyme disease symposia, provide educational in-service meetings for schools and companies.

The LDA offers a wide variety of resources, many free. Download and print free brochures, pie graphs and maps, order free handouts or low cost books, view and/or purchase scientific conference videos, access information on Lyme and kids and schools, apply for LymeAid 4 Kids funds for children without insurance for Lyme disease, read articles on disability and medical insurance, and view tick-borne diseases rash photos. Access the LDA's Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination, and Treatment Guidelines, written by author Pamela Weintraub for the LDA in 2001, years before her book, Cure Unknown Inside the Lyme Disease Epidemic, was published.

We are constantly trying to provide products and services to help raise awareness.  Here are the top ten picks over time.

TickLES (Kids' 14 min prevention video)


Order Free Brochures (limited to 200)
       

Other Tick-Borne Diseases (co-infections)

Dr. Referral (connect to Lyme-literate doctors nationally)
       
How A Tick Can Make You Sick (prevention PowerPoint geared to kids, schools & scouts) Lyme Disease Case Maps (where & how much US Lyme)
       
Medical Photos (ticks, rashes and microscropic images) How to Remove a Tick & Prevention
       
Public Service Announcements (free PSAs for your own use) LDA Printable Lyme Handouts


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Information on Lyme disease to educators and students is vital so that children with Lyme disease are understood by their teachers and their peers, and they are given proper educational accommodations by the school. Since children are at the highest risk of acquiring the disease, they need materials on prevention. LDA also provides monies for children without insurance coverage from its LymeAid 4 Kids fund.

These links are provided by LDA as resources only. LDA does not make recommendations regarding services listed nor does it endorse them. LDA is not affiliated with these organizations.

The Lyme Disease Association has published many brochures, which can be ordered for free, that contain information about tick-borne diseases including symptoms, testing and tick removal.  LDA has also published several books, one especially for children with chronic Lyme disease.

In addition, LDA has created many charts, graphs, reports and hand-outs about tick-borne diseases, some specific to individual states, and you can download all of them for presentations or handouts.

DVDs/videos have been produced by the LDA over time, featuring prominent scientists in the field of tick-borne diseases talking about research break-throughs.

A number of publishers have donated books from authors who have Lyme disease, aka, Literati with Lyme, for the LDA to sell to provide program funding.

This section contains materials developed and copyrighted by the Lyme Disease Association (LDA) and/or its affiliates to be used by anyone as educational handouts. Each printout must be used in its entirety, including all contact info.

 

This section contains information on legislation that has been introduced and/or passed by the federal government and individual states. It includes sections that contain the position the Lyme Disease Association has taken on various bills, if any; information on how to contact your legislator; and what you can do to help specific laws be passed or defeated. Additionally, there is a section on various government departments. From time to time, the LDA will post articles from the departments/agencies in these sections that pertain to Lyme disease that might be of interest or importance to the public, including policies being considered or adopted.

 


 

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One tick bite can give people more than one tick-borne disease (co-infection).  In addition to Lyme disease, here are some other tick-borne diseases found in the US.

Disclaimer: These Lyme disease research studies are presented for informational purposes only. Listing of the study does not constitute an endorsement, nor is LDA suggesting that you participate in any study(ies). LDA has no further information available on these studies. You need to contact the investigator for details. Do not contact LDA about these studies.

The Lyme Disease Association has as one of its goals to stop the spread of Lyme & other tick-borne diseases. Tick checks are very important to prevention as is proper tick removal The following links may be helpful in addressing the issue of lyme disease prevention and control. Also checkout our downloadable info graphic for a summar of prevention tips. LDA does not endorse or sponsor products.  Material is presented to help people gain quick access to products which they may or may not choose to use.

Lyme disease is a bacterial disease which in the US is caused by the bacteria Borrelia burgdorferi or newly discovered Borrelia mayonii. The bacteria can attack all of the systems in the body and produce many different Lyme disease symptoms, which is why it has often been called the great imitator. Women with Lyme disease who are pregnant or are thinking of becoming pregnant need to receive appropriate care from a knowledgeable Lyme disease doctor. Information on Lyme and pregnancy can be found in this section. Guidelines which help doctors with Lyme treatment have been developed and some can be found here, as well as various photos and videos pertaining to Lyme disease bacteria.

There are tens of thousands of articles published on Lyme disease, many in peer reviewed medical journals. These articles carry the most scientific weight as they are reviewed by a committee of doctors and scientists before they are accepted for publication. Generally, LDA is not permitted to provide complete articles due to copyright laws, but sometimes, LDA is granted the rights to publish partial or complete articles on its site for your viewing.
 

LDA has compiled maps, graphics, and tables based on the Centers for Disease Control and Prevention (CDC) numbers which are based on CDC’s surveillance criteria.  The CDC reported numbers for Lyme disease are said to represent about 10% of actual cases that occur each year. The CDC surveillance criteria are meant for SURVEILLANCE, not DIAGNOSIS, TREATMENT, REIMBURSEMENT, or STANDARDS OF CARE, states CDC.

Check the descriptors in all the maps and graphics to see how the new change in surveillance reporting is reflected in the particular map and graph you are viewing. (On the map see the box labeled "States Ranked by Reported Cases" and click on the triangle for details).  Click on your individual state to see a list of reported cases in that state since 1990. Also note there are case NUMBER maps showing the number of cases in each state and INCIDENCE maps showing the number of cases per 100,000 of population. A symbol on a state indicates that the state changed its reporting criteria. Click on the symbol to get details.    Note that CDC adopted significant Lyme disease reporting requirements in 2008, which were developed by the Council of State and Territorial Epidemiologists (CSTE), charged by Congress with disease surveillance.

 1990 2015 TotalLymeCases

 Click US map to go to all LDA's Interactive Lyme disease Case Maps.

 

 

ContagionLive, Infectious Diseases Today, interviewed Pat Smith, President, Lyme Disease Association on various topics surrounding Lyme and tick-borne disease.  See all 9 segments below. (link to the Contagion® website)

 

 Click here to view LDA Contagion article
"Is the Medical Community Behing the Times When It Comes to Treating Lyme?"

 

 

 

ContagionLive Interview Trailer

Contagion® Peer Exchange® Panel Discussion focusing on Lyme disease.

Why Are We At Odds Over Lyme Disease? Exploring the Impact and Controversy

Panelists: Peter L. Salgo, MD; Robert C. Bransfield, MD, DLFAPA; Samuel Shor, MD, FACP; Leonard Sigal, MD; Patricia V. Smith, President, Lyme Disease Association.  Watch all 13 segments below.  (link to the Contagion® website)

Watch teaser above for Contagion® Peer Exchange® Panel: Lyme Disease

Contagion® Peer Exchange® : A unique opportunity to view lively discussions featuring peer-to-peer exchanges that provide authoritative insights, opinions, and perspectives on important issues facing today's infectious disease professionals.

The Lyme Disease Association (LDA), an organization which expanded its focus nationally 17 years ago, is dedicated to Lyme disease education, prevention, research funding, and patient support. An average of 97 cents of every dollar raised by the Lyme Disease Association is spent directly for its programs.

The Lyme Disease Association has worked with many different entities over time to help with providing programs. The lists here contain some of the celebrity partners and also the corporate partners which also includes university research partners. LDA apologizes for any ommissions. 

In 1991, the Lyme Disease Association began as an informal group and then incorporated as Lyme Disease Association of Central Jersey, Inc. (LDACJ) in 1992 and then became Lyme Disease Association of New Jersey, Inc. (LDANJ) in 1993. It was formed by several patients and doctors─the Fordyce and Drulle Families were particularly instrumental ─who saw the need to organize and fund research and educate people. It had first a regional then state focus.
 
In 1997, Pat Smith became President of LDANJ and it began to have influence far beyond NJ borders.  She saw the increasing need for a national organization. Supported by entreaties from doctors and patients alike, the LDANJ Board of Directors in 2000 changed the name to Lyme Disease Association, Inc. (LDA) and changed the focus to a national one, which had a broader mission expanding research funding (LDA funded research has appeared in 45 scientific journal publications to date) and including patient support, e.g., LymeAid 4 Kids fund. At that time, LDA decided to remain an all volunteer organization without paid employees so that all monies would be dedicated to the mission.  In 2013, 144 individuals volunteered 22,840 hours to assist with LDA programs. Additionally, LDA created a loose umbrella, LDAnet, where other groups could strategize and collaborate with LDA to impact Lyme disease issues nationally.

It is very important that the correct information on tick-borne diseases is made available to patients, the public, officials, and even physicians. Often, the controversy surrounding Lyme prevents the full spectrum of information from getting to patients, who may need it to make important decisions which affect their health and to policy makers who can positively affect how Lyme is diagnosed and treated. The LDA is in the forefront nationally in providing up to date information on all aspects of the disease through speeches, testimonies and formal positions adopted by the LDA.

Often the LDA receives requests by governing bodies to provide written or spoken testimoney to them so they can make a decsion on legislation or other policy decisions.

The LDA has spoken at hundreds of events over the years including those for schools, corporations, community groups, libraries, government and military, parks, scouts, sports groups, medical organizations, and support groups. In this section, you will find some of the talks presented.

Sometimes, it is necessary for the Board of Dirctors of the LDA to adopt a formal resolution on issues which are of critical importance to LDA's mission.  Other organizations may follow suit.

Governent officials sometimes invite the LDA to attend preess conferences in their states to educate their constitiuents about the problems assiciated with Lyme disease.

The Lyme Disease Association has worked hard to provide programs which will lead to the prevention and cure of Lyme disease. LDA has been successful in partnering with Time for Lyme, its Connecticut affiliate, to open the Lyme & Tick-Borne Diseases research Center at Columbia University where researchers are studying chronic Lyme disease. LDA has established Literati with Lyme, famous authors who have Lyme disease themselves who work to educate others, and LDA has hosted 18 Lyme & Tick-Borne Diseases Scientific Conferences, 16 in conjunction with Columbia University. Over 100 grants have been awarded for scientific research and education projects. LDA also has a track record of writing and/or actively supporting successful Lyme disease legislation in many states and specific language and monies for Lyme disease at the federal level.

Congressman Christopher H. Smith ((NJ-4) addresses the overflow audience at the June 2, 2010 Lyme Disease Congressional Forum in Wall Township, New Jersey which he hosted.

The national New Jersey-based Lyme Disease Association, Inc. (LDA) and Connecticut-based Time For Lyme (TFL) who are affiliated 2012-ColumbiaTeamSmorganizations, partnered with Columbia in the development of this center concept and devoted a large percent of their efforts and resources over 5 years to funding the endowment for the Center. People nationwide contributed to make this effort a success.

The Lyme and Tick-Borne Diseases Research Center will use the vast resources of Columbia University in New York to bring together various disciplines from within and outside of the university to address fundamental clinical and basic science questions that plague adults and children affected by Lyme disease.

The clinical and research mission includes studies of new diagnostic tests, clinical phenomenology, immunopathogenesis, co-infections, genetic markers of vulnerability, functional and structural brain imaging, neuoropathology of post-mortem brains, and well-controlled studies of new treatments. This Center, the first such facility in the world devoted to chronic Lyme disease, will serve as a national resource, providing pilot grants to researchers nation-wide and focusing the latest scientific technology on helping to resolve the problems of chronic Lyme disease.

This section contains information on legislation that has been introduced and/or passed by the federal government and individual states. It includes sections that contain the position the Lyme Disease Association has taken on various bills, if any; information on how to contact your legislator; and what you can do to help specific laws be passed or defeated. Additionally, there is a section on various government departments. From time to time, the LDA will post articles from the departments/agencies in these sections that pertain to Lyme disease that might be of interest or importance to the public, including policies being considered or adopted.

It is important for the LDA to take a lead role in forming relationships with all levels of government. Laws and policy decisions often affect how Lyme disease is viewed by the public and physicians, and LDA needs to clearly articulate the problems which are created by government actions or which can be rectified by government actions. Additionally, we need to ensure that the information presented to government officials is accurate and supported by science.

The departments and agencies of the federal government often play a role in Lyme disease. They may issue policies, guidelines, advisories, or other information which may be useful to Lyme patients, doctors, or the general public. LDA may link to or list some of those government publications which it feels may be important. Complete agency or department information on Lyme disease may be found on each individual agency/department website.

Candy Brassard, Senior Biologist, U.S. Environmental Protection Agency Office of Pesticide Programs; C. Ben Beard, PhD, Director, Bacterial Diseases Branch, Division of Vector-Borne Infectious Diseases, Centers for Disease Control & Prevention at a Meeting at EPA on Lyme in Virginia in 2006.

 

The Tick-Borne Disease Working Group was established by the 21st Century Cures Act to improve federal coordination of efforts related to tick-borne diseases. Members will review all U.S. Department of Health and Human Services efforts related to tick-borne diseases to provide expertise and help ensure interagency coordination and minimize overlap, examine research priorities and identify unmet needs.

The Shopping Cart contains items that are published by the Lyme Disease Association and sold at or close to cost of production. These items include 2 books, brochures (which are free up to 200 copies, and above that a postage price applies) and DVDs/videos.  Many of the videos are from the Lyme Disease Association's fully accredited medical conferences (8 jointly sponsored by Columbia University).

Also in the cart are Literati with Lyme books which are books whose authors have chronic Lyme disease ( Amy Tan, Rebecca Wells, Jordan Fisher-Smith) and which have been donated to LDA by the publishers.
 
Other items may be added for sale as they become available.
 
All monies are used to support the programs of the LDA

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Click here to Order LDA Brochures

 

 

 

 

The LDA website has video clips of several of the conferences available for free viewing for PC users: click here

This section on Federal Legislation contains Lyme disease bill actions in Congress from the 2007-2008 legislative session to the present 2014-2015 legislative session.

To see information on the bills in a particular session of Congress, click on the links in the left hand menu, e.g., click Legislative Session 2014-2015 to read about current bills in Congress.

The Lyme Disease Association (LDA) has been working to try to stop the spread of Lyme disease and find a cure for chronic Lyme disease for almost two decades. LDA has worked on educating federal departments and agencies, meeting with Health & Human Services, the Centers for Disease Control & Prevention, the National Institutes of Health as well as with the military.

Additionally, LDA has worked with members of Congress over that time period and has been successful in helping to achieve Labor HHS appropriations language and funding and Department of Defense funding for Lyme and tick-borne diseases. LDA has also been an impetus for bills introduced into Congress on Lyme and tick-borne diseases which had their genesis in 1997. The LDA has also testified on Lyme disease before the US House of Representatives Foreign Relations Health & Human Rights Subcommittee and the US House of Representatives Energy & Commerce Health Subcommittee, 2012 and 2013 respectively.

 

Please note some links may no longer be working.  We apologize for the inconvenience.

Items below are in chronological order with most recent being on top.

2009-2010 Lyme Bill HR 1179 / S 1352 bill session is over and no action is currently needed.  Watch for new developments coming soon ...

short thing about other helpful state info - pat needs to create

The Lyme Disease Association has been providing fully accredited continuing medical education (CME) Lyme & tick-borne diseases conferences since 1999. Each conference has featured more than a dozen national and international researchers and physicians speaking on a wide variety of topics including epidemiology, the organisms causing tick-borne diseases, proteins, diagnosis, treatments, cognitive difficulties, vaccines, veterinary issues, ticks, and mapping of genomes.

The Lyme Disease Association, Inc. with joint provider Columbia University, is holding its 18th annual scientific CME conference, Lyme & Other Tick-Borne Diseases: What Clinicians Need to Know about an Expanding Epidemic.  Brian Fallon, MD, Columbia University is Conference Director. It will be held at the Hilton Hotel, Penns Landing, Philadelphia, PA on Saturday September 23 and Sunday September 24, 2017.

The conference is designed for physicians and researchers but the public is invited to register. 14.5 AMA PRA Category 1 CreditsTM are offered by Columbia University to CME-registered physician attendees. The conference features twenty faculty consisting of clinicians and researchers from across the US.  Below are the speakers who have confirmed to date.

The Lyme Disease Association, Inc. with joint provider Columbia University, is holding its 19th annual scientific CME conference, Lyme & Other Tick-Borne Disease.  Brian Fallon, MD, Columbia University is Conference Director. It will be held at the Marriott Providence Downtown, Providence, RI on Saturday October 27 and Sunday October 28, 2018.

The conference is designed for physicians and researchers but the public is invited to register.  AMA PRA Category 1 CreditsTM will be offered by Columbia University to CME-registered physician attendees (credits TBD). The conference features faculty consisting of clinicians and researchers from across the US.  Below are the speakers who have confirmed to date.

The Lyme Disease Association, Inc. with joint provider Columbia University, is holding its 17th annual scientific CME conference, Lyme & Other Tick-Borne Diseases: New Strategies to Tackle an Expanding Epidemic. Brian Fallon, MD, Columbia University is Conference Director. It will be held at the Doubletree by Hilton St. Paul Downtown, St. Paul, MN on Saturday October 15 and Sunday October 16, 2016.

The conference is designed for physicians and researchers but the public is invited to register. 14.0 AMA PRA Category 1 Credits TM are offered by Columbia University to CME-registered physician attendees. The conference features twenty faculty consisting of clinicians and researchers from across the US and one from Switzerland.

This section contains activity which Members of Congress or Congressional Committees or Caucus' are undertaking relative to tick-borne diseases.

This section contains activity which Members of Congress or Congressional Committees or Caucuses are undertaking relative to tick-borne diseases.

In 1996, Lyme disease support group leaders and advocates in Dutchess County, formed a committee to address issues of concern regarding Lyme disease. Currently the Hudson Valley Lyme Disease Association consists of a Board and community members who address issues related to Lyme and other tick borne diseases (TBDs).

The Lyme Disease Association has published many brochures, which can be ordered for free, that contain information about tick-borne diseases including symptoms, testing and tick removal.  LDA has also published several books, one especially for children with chronic Lyme disease.

In addition, LDA has created many charts, graphs, reports and hand-outs about tick-borne diseases, some specific to individual states, and you can download all of them for presentations or handouts.

DVDs/videos have been produced by the LDA over time, featuring prominent scientists in the field of tick-borne diseases talking about research break-throughs.

A number of publishers have donated books from authors who have Lyme disease, aka, Literati with Lyme, for the LDA to sell to provide program funding.

2007 CT GovRellSignBill7/16/09 CT Governor Rell signs Lyme doctor protection bill.The Lyme Disease Association (LDA) has been working to trying to stop the spread of Lyme disease and find a cure for chronic Lyme disease for almost two decades. LDA has worked on educating multi state officials from legislators to governors to health departments. LDA has also worked with county and local officials who often are looking for ways to control tick-borne diseases in their specific areas which may be more heavily endemic than the state at large.

LDA has also worked with groups in many states to develop, pass, and implement state legislation

In this section, you can view some of these efforts and perhaps find ideas to use in your state.

2009 CorningRepMassa2009 DCbriefing

2007 PAHouseComm2008 PA Proclamation22008 Pennsylvania Proclamation declaring May Lyme Disease Awareness Month,

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Welcome to the Lyme Disease Association blog, LDALyme Literacy. Check here for up to date news, events and literature about Lyme disease symptoms, treatments, funding and government action.

HS Pat 2012Patricia Smith (Pat), President of the Lyme Disease Association, Inc. graduated from Monmouth University. She has been involved with Lyme disease issues for 33 years and is a Member of the Columbia Lyme & Tick-Borne Diseases Research Center Advisory Committee, the Congressionally Directed Medical Research Programmatic Panel on Tick-Borne Diseases, and the Environmental Protection Agency Pesticide Environmental Stewardship Program. She has twice testified before US House Subcommittees on Lyme and is former Chair of the NJ Governor’s Lyme Disease Advisory Council. She has published on and been interviewed for broadcast, electronic and print media on Lyme and tick-borne diseases. For complete bio go to https://www.lymediseaseassociation.org/about-us/55-lda-boards/926-lda-board-of-directors-bios

The Lyme Disease Association (LDA) provides this list of a few selected books that may be of interest to professionals, patients and the public. Topics range from books that provide information on Lyme disease symptoms and treatment, Lyme books for and about children, a text on tick-borne diseases, a history of Lyme and advocacy until 2004, property protection, and experiences of well known individuals with Lyme disease.

Disclaimer: There are many more published books about Lyme which you can find in other places on the net. Inclusion on the LDA list should not be viewed as an endorsement, and the views of the authors may not be necessarily those of the LDA. Please do not send us books to review for the list as we do not have the staff to review material. Thanks.

 

Lyme Disease Association, Inc.
PO Box 1438, Jackson, NJ 08527 

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