Sustained Effort & Accomplishments of LDA

LDA Grant Related Accomplishments in 2013

Other LDA Activities in 2013

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With your encouragement and support, the all-volunteer run national Lyme Disease Association (LDA) has been fighting long and hard to overcome the political, scientific, and medical obstacles that have impeded progress in the understanding and treatment of Lyme and other tick-borne diseases (TBD). Like many of our volunteers and many of you, my resolve grew from personal experience - two of my three daughters acquired Lyme which transformed our family life. Now with four young granddaughters, confirmation that Lyme cases are ten times higher than previously reported, confirmation of cardiac deaths due to Lyme, and emerging threats - such as the deadly Powassan virus - I know that our commitment to research and education cannot waiver.

Thankfully, we - all who are fighting on behalf of patients - have made tangible progress, and I am confident that we will continue to make real progress and, with sustained effort, will be successful in our goals to prevent, diagnose, and cure Lyme and other TBD.

With your generous help, we can continue the LDA's history of accomplishments. Please donate now.

In its search for reliable methods to prevent, diagnose and cure Lyme, the LDA has provided over 94 research grants -acknowledged in 33 peer-reviewed scientific journal articles- and partnered to endow the research center for chronic Lyme disease at Columbia University and recently gave a grant for a tissue bank there for Lyme research. The LDA has: presented 14 annual Lyme & Other TBD medical and scientific conferences; awarded 80 educational grants to organizations throughout the country; distributed 2.2 million free tick cards and brochures; provided almost $1/4 million from its LymeAid4Kidsprogram for children without insurance coverage for diagnosis and treatment.

Recognizing their large role in public health in the US, the LDA has met in Washington, DC with many government agencies and departments and the military regarding the spread of Lyme disease, including testifying twice before subcommittees charged with domestic and global health issues in the U.S. House of Representatives. (Testimonies) LDA also was twice invited and met with the Vector-Borne Diseases Division of the Centers for Disease Control & Prevention (CDC) in Ft. Collins CO and continues to work in that arena.

New developments in 2013 related to LDA grants constitute major steps forward in physician education and physicians' ability to be able to more effectively manage possible cases of Lyme and other TBD. Most recently, LDA is providing funding for a physician-education project with principal investigator Columbia University's Dr. Brian Fallon to produce several new tools for use by physicians. LDA will extend the project's reach by producing and distributing supporting materials. Another accomplishment was publication of Dr. Kathy Spreen's "Compendium of Tick-Borne Diseases - A Thousand Pearls," which LDA provided a grant to help publish, an 800+ page reference volume for managing possible cases of TBD. Dr. Spreen researched and wrote the volume after facing an avalanche of conflicting information when trying to rescue her own son tick-transmitted illness. Three other studies which LDA helped to fund were published in peer-reviewed journals in 2013, including a study documenting cases of the Lyme disease causing organism in patients and ticks in Florida and Georgia - which should help alert the medical establishment of the need to consider a Lyme diagnosis in non-endemic areas.

LDA has again awarded educational grants to Lyme disease organizations and other entities across the country to help increase awareness and knowledge of Lyme and other TBD including a grant for 2 billboards in 2 different states and one to volunteer health care professionals to provide packets in rural areas.. LDA has awarded LymeAid 4 Kids grants to more families who did not have resources for medical care and is accepting additional requests.

LDA held its 14th annual medical/scientific conference on Lyme and other TBD in Minnesota, which was the first ever national conference on TBD held in the Upper Midwest.

LDA attended a meeting at CDC's Fort Collins CO facility to discuss new information on TBD across the country; LDA made a presentation detailing studies that have documented the rapid spread of Lyme in non-endemic states.

In Washington, DC, in November, LDA President testified before a US House Subcommittee on Health on HR 610, a bill for the Establishment of a Tick-Borne Diseases Advisory Committee. Pat discussed the serious and growing threat of TBD, the dire effects on patients many of whom are children, the economic impacts, and the need for a patient voice.

LDA wrote in support of a bill in Maine, which was signed into law, requiring creation of online information alerting physicians to difficulties in diagnosing and treating Lyme; the law designated the LDA website as a resource. LDA also submitted written testimony in support of a Lyme bill in Massachusetts and a letter to committee members for a US Senate field hearing on Lyme disease held in Connecticut.

Representing LDA, Pat Smith participated in numerous media interviews, including printed media, radio and television. LDA volunteers participated in community events, such as a Lyme Disease Seminar & Health Fair in Danbury, CT, presented by the Ridgefield Lyme Disease Task Force and the Mt. Equinox Uphill Bike Climb in Manchester, VT, which raised funds for the LDA and other local charities of the Manchester Rotary Club. Several LDA television interviews on Lyme were aired and LDA participated in a Congressional press conference on tick-borne disease to kick-off Lyme awareness month.