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Pat Smith Appointed to HHS Working Group in DC! Help LDA Make 2018 More Successful

January 2, 2018

Wishing you good times, good cheer, a healthy New Year!

All of us at the Lyme Disease Association (LDA) thank you for your support in 2017.

Let’s continue to work together in 2018 to find a cure.

Lyme Disease Association: Volunteers in Action—Stop Lyme

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Look what we have achieved with your support!

2018 can be better—Donate today to LDA

12/29/2017

LDA Negotiations Leads to HHS Tick-Borne Disease Working Group: Pat Smith Sworn In as Member The LDA led negotiations for Lyme bill language passage in the 21st Century Cures Act, which culminated in the formation of the Health & Human Services Tick-Borne Diseases Working Group (TBDWG).

LDA President Pat Smith was sworn in as a panel member in DC (photo, 5th from L) at the Dec.11, 12 meetings, where she voiced the necessity for a report to be given to the TBDWG by the other existent DC federal working group—one which has no public members, does not meet in public, and has no formal charter. The TBDWG agreed. Creation of TBDWG subcommittees was also discussed. Ms. Smith presented the need for the inclusion of a surveillance subcommittee, despite CDC’s statement that it is not responsible for surveillance. Ms. Smith indicated that increasingly restrictive surveillance definitions have led to patients not being able to get diagnosed or treated, especially in low incidence areas. The TBDWG then created such a subcommittee. Subcommittee Announcement / Smith Appointment

During public comment portion, several patients, including two young teens, spoke about their life with Lyme disease. LDA Board member Tim Lynagh spoke about surveillance issues including that CDC no longer is reporting out weekly Lyme case numbers in its MMWR. HHS

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$$ Awarded to Lyme Researchers in Congressionally Directed Medical Research Program LDA worked with Congressman Chris Smith to legislate the inclusion of tick-borne diseases into this program funded through the Department of Defense initially in 2016, and again in 2017—a total of $10 million new research $$ for Lyme & TBD. LDA President Pat Smith is a member of the CDMRP Programmatic Panel. The first Lyme grants were awarded to research recipients including Drs. Ying Zhang, Charles Chiu, and Kevin Esvelt. See cdmrp.army.mil/tbdrp/default/ LDA CDMRP article

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LDA-Funded Research Now Recognized in 42 Scientific Journal Articles In 2017, LDA had its funded research published in two more scientific journals, bringing its total to 42 journal articles which contain research supported by LDA. The new research was by Dr. Travis Taylor on Powassan Virus (POWV) & Tick-Borne Encephalitis Virus, both with high fatality rates—POWV cases increasing in the US—and Drs. J. Feng, Ying Zhang et al, on activity of sulfa drugs and combinations on B. burgdorferi. LDA provided monies toward 3 different research grants in 2017. 42 Scientific Articles

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LDA 18th Annual Continuing Medical Education (CME) Scientific Conference for Physicians & Researchers Jointly sponsored in Philadelphia by Columbia University, a 20 physician faculty presented to doctor/researcher attendees from across the US. LDA provided conference scholarships to medical students/others thanks to A & S Cohen Foundation support. Congressman Chris Smith made a surprise appearance and spoke to the group about early and current DC Lyme efforts. LDA Conference

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LymeAid 4 Kids Fund (LA4K) Since 2004 program inception, LDA has awarded $338,400 to families for children to get diagnosed/treated for Lyme & tick-borne diseases. LDA awarded $17,400 in 2017 which depleted LA4K fund, and now we ask your help to provide more funds for our children. Author Amy Tan, herself a Lyme patient, helped LDA initiate and has supported the fund. LA4K

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Education & Sponsorship Grants LDA has provided 173 education & conference scholarship grants to date. In 2017, LDA awarded grants to the Colorado Tick-Borne Diseases Awareness Association’s 2nd Rocky Mountain Lyme Forum and 3rd Midcoast Maine Lyme conference for the public; to University of Texas for online education program; to CME programs on Lyme including Allegheny Health (PA) and Partnership for Tick-Borne Diseases Education (MN); to other groups for education in California, Kansas/Missouri, and New York. Education Grants

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Distribution of LDA Brochures/Literature The LDA has provided ~2.75 million pieces of literature to the general public, officials, doctors and other health care providers, schools, the military, corporations. This is accomplished through website orders, distribution at events, and through the LDAnet umbrella network organized by LDA, which has over 44 groups nationwide participating. Most literature is free (LymeR Primer^TM, ABCs of Lyme Disease^TM, TickCard^TM) except for mailing charge. LDA Brochures

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Automatic Doctor Referral The LDA maintains a national online doctor referral for Lyme literate physicians. Tens of thousands of members of the public have used the free service. Doctor Referral