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December 22, 2014
Message From the President

The LDA is going into its 25th year, no employees. The LDA work below is only over a few months' time, and accomplished by patients and families of patients nationwide with some help from a few consultants and MAINLY from YOU along the way. We value your dollar, we provide a high level of program oversight, and our success has been high - 35 peer review journal articles feature research supported by LDA! HELP US HELP YOU.  DONATE TODAY

97 cents of every dollar directly helps the Lyme cause ─ who else can provide that value for your dollar. 

FDA: Take Over Lyme Tests

LDA is working as part of a nationwide team to try to influence the proposed new Food & Drug Administration (FDA) Lyme Testing Guidance, to be adopted early in the New Year. Under this guidance, current Lyme tests which are performed by the specialty labs (Laboratory Developed Tests-LDT, currently regulated by CLIA), which many Lyme literate physicians feel are  more reliable diagnostic tools, would be brought under the auspices of FDA. They would be required among other things to provide safety data and log in complaints. The Lyme tests currently under FDA's auspices would be "grandfathered in" and that safety data for those Lyme tests as it is currently collected is not monitored by FDA due to the number of different Lyme tests non-specialty labs use. This is an inequity that needs to be rectified. Pat Smith, LDA president, has been accepted to speak at the public meeting at FDA in early January and will address several issues surrounding the Guidance. LDA is also working with Congressman Chris Smith who has met with the FDA on this important issue and has reached out to Senator Richard Blumenthal for his help.

LDA Grant for Powassan
The LDA has just provided a grant for Dr. Travis Taylor, University of Toledo. Dr. Taylor, whose background includes
Travis Taylor, PhD - LDA/Columbia Annual Scientific Conference
 work at NIH's Rocky Mountain Labs, is working on tick-borne flaviviruses, which includes Powassan, which has no treatment and a high fatality rate.

LDA Looking for Doxy Price Hike Solution
Over the summer, LDA President Pat Smith attended a press conference with Senator Charles Schumer on the shortage/price hike on doxycycline. The LDA has not abandoned that issue but is working diligently with stakeholders to potentially have an inexpensive source of doxy available for patients.
NY Lyme Bill Signed  
The New York Lyme bill has been signed by Governor Cuomo. LDA congratulates the NY Groups who worked hard to get it through the legislature, particularly the Auerbachs. The LDA was pleased to be a part of the effort to encourage patients to contact the Governor to sign the bill, and LDA sent its own letter to the Governor, detailing the NY legislative history LDA was involved in, including helping to write the memo which was memorialized in this new legislation (Click here for official actions on the bill).  At this time, we are awaiting the content of the Dec 17, 2014: APPROVAL MEMO.27 which goes along with the bill and also an amendment that the Governor and NY legislature have apparently agreed upon. It has not yet been made public, therefore the LDA is waiting to determine what impact either would have on the effectiveness of the bill. 
LDA Conference Videos Onsite
The past month, the LDA has placed three new videos for your information on the LDA YouTube Channel: Dr. Ken Liegner on Lyme testing; Dr. Richard Rhee, a neurologist, speaking on Lyme; Ellen Stromdahl, US Army Health Command, on ticks in the Midwest. All speakers are from the 2013 LDA Lyme & Tick-Borne Diseases Conference in Minnesota. More lectures from the conference will be available on the site soon.
Appalachian "Tick" Trail Research
The LDA and the National Parks Service provided grants to Dr. Karl Ford, a natural resource scientist, for his journey on the Appalachian Trail, where he collected ticks by flagging and submitted them for laboratory analysis for tick and pathogen identification to the U.S. Army Public Health Command's Ellen Stromdahl and Robyn Nadolny. He published his experiences in Appalachian Trail Journeys, The Magazine of the Appalachian Trail Conservancy (Click here for Article) and his research on the trail has been accepted for publication by the journal Park Science: Integrating Research & Resource in the National Parks.
Lyme in the US: Free Maps
LDA's newest case maps are on the website, free printable colorful maps showing the number of cases from 1990-2013 and also individual 2013 case maps and incidence maps. Helpful resources for your talks, papers, doctor, etc. (Click Here for Case Maps)
ABOUT THE LDA: An all-volunteer national nonprofit 501(c)3, dedicated to Lyme disease education, prevention, research, and patient support. LDA has been accepted into the Combined Federal Campaign 2014 as an approved national charity for Federal Workplace Giving. It's a Guidestar.org exchange gold level member, recognized for transparency and is an Environmental Protection Agency PESP Partner. LDA offers its LymeAid 4 Kids assistance program and has funded over 95 research grants─ funded research has been published in 35 scientific journals.  LDA has provided 15 annual Continuing Medical Education Lyme & Other Tick-Borne Diseases conferences for physicians and researchers.
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