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May 2014
In This Newsletter
DC Lyme Legislation Introduced
NYS Residents: Action Needed
LDA/Columbia 15th Lyme Conference: Full House
LDA/SLAM Partner To Raise Lyme Awareness
In Memory of Pioneer Lyme Researcher
Helpful Links
Lyme Case Maps
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RI Capitol

"Green" for Lyme

Awareness/Conference  

Thanks to LDA
Rhode Island Chapter
Today: Federal Webinar on Lyme Persistence - Join In!
  
Sign Up Info Below
Ben Beard, PhD, CDC Speaker, LDA/Columbia 2012 Lyme Conference  

 

 Webinar Convener


Today, May 22, 2014 from 1:00-2:30PM ET, a
webinar hosted by the HHS Working Group on Lyme & Other TBD will highlight the state of research on persistence of Borrelia burgdorferi. Significant animal studies will be discussed by the researchers who did the studies. Phone lines will be available for call in questions.
  
     
Joseph J. Breen, PhD, NIH
Facilitator, LDA/Columbia 2014 Lyme & TBD Conference
 
Webinar Moderator
  

 

 

 

 

Click here for Information on Webinar and How to Participate

 

 

  

  
Federal Lyme Legislation Introduced Yesterday in DC
  

The volunteer-run national Lyme Disease Association (LDA) is supporting the "Vector-Borne Disease Research Act of 2014," introduced yesterday by U.S. Representative Chris Gibson (NY-19). Since being

Representative Chris Gibson

elected to Congress in 2010, Rep. Gibson has been a vociferous proponent for better awareness, diagnosis and treatment of tick-borne diseases (TBD). Upon entering office, he immediately joined with long-term Congressional advocates for TBD sufferers, Reps. Chris Smith (NJ) and Frank Wolf (VA), as well as the ranking member of the House Agriculture Committee, Colin Peterson (MN).

 

The Act strengthens the structure at the federal level for addressing vector-borne diseases, defined for the bill's purposes to mean infections "transmitted to humans or other animals by ticks, mosquitoes, or fleas, such as Lyme disease." The LDA appreciated the opportunity to provide input to the House as this legislation was being drafted to ensure robust provisions to address TBD within the more encompassing VBD bill.

 

The Act requires the Directors of NIH and CDC ("Directors"), within 6 months of enactment, to identify 2 or more bacterial or parasitic diseases that have a high domestic incidence and to develop a scientific framework for the conduct or support of research for each. For purposes of identifying a VBD and developing a scientific framework under this bill, tick-borne diseases, including Lyme and other TBD will be treated as a single VBD. That grouping takes into account the geographic spread of ticks, multiple infections carried by the same ticks, and the clinical significance of co-infections in humans. This action prevents the majority of lesser known TBD in the U.S. from being left outside the scope of a framework, but allows for discretion in how to address each TBD.

 

Read More Here

 
Action Needed - New York State Residents


 

Your assistance is needed to ensure that sick patients receive the  

appropriate treatments that they require for Lyme disease.

NYS Senate Bill S5520-B and Assembly Bill A7558-A will protect NYS doctors' rights to decide the best treatment plans for Lyme disease. The Assembly has already passed this bill, thanks to Assemblywoman Didi Barrett.  Act now to "encourage" the Senate to pass the identical bill now before them. It is currently stalled in the Health Committee, where previous versions have been left to expire.

 

  
The following link will take you a page where you can take ACTION!  
  
  
LDA/Columbia Lyme Conference: Full House      
                       
Linden T. Hu, MD Professor of Medicine at Tufts University spoke on Xenodiagnosis study (ticks biting humans)

LDA and Columbia University College of Physicians and Surgeons 15th Lyme & Tick-Borne Diseases: Medical, Neuropsychiatric & Public Health Implications conference, offering CME (physician) & CE (social worker, psychologist) credits was held in Providence, RI on May 3 & 4, 2014.

The conference faculty addressed a full house which included mainly physicians, other health care providers, and researchers, but also   advocates and members of the public. The 21 speakers, noted researchers in the field of tick-borne diseases and physicians who treat tick-borne diseases, provided Powerpoints on topics which included, Lyme arthritis in children, atypical Lyme rashes, Lyme misdiagnosed as ALS, cardiac deaths due to Lyme, persistence of bacteria after antibiotic treatment, immune suppression in mice with Lyme, vaccine for Lyme and anaplasmosis, and the mental health aspects of Lyme including risk of suicide. Other speakers address newly emerging TBD such as Powassan encephalitis, tick-borne encephalitis virus, STARI, Heartland virus, and Borrelia miyomotoi. Possible genetic link to Lyme arthritis in mice, new testing methodologies, pain management and IVIG were also discussed. 

                         

Sturbridge Lyme Awareness of MA (SLAM) and the LDA have again partnered to produce a billboard for the entire month of May for Lyme awareness. It is located on Rt. 20 eastbound in West Springfield, MA.

SLAM (website / facebook)

                          

Dr. Margret H. Bayer, a researcher whose early work with her husband, Dr. Manfred Bayer, on Lyme disease PCR, is still cited today, died on May 12. The Drs. Bayer received funding from the LDA for their groundbreaking research which resulted in the often cited publication in Infection 24 (1996). Link to abstract  Her contribution to Lyme research with that project and others that followed showed her dedication to helping provide Lyme patients with answers as to why they continue to be sick despite treatment for the disease. It is sad to lose someone with her talent and dedication and we send our condolences to her husband, Dr. Manfred Bayer, and to her entire family for their loss.

 

Margret Bayer (obituary)

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 34 scientific journals.  LDA has provided 15 annual Continuing Medical Education Lyme & Other Tick-Borne Diseases conferences for physicians and researchers.