FDA Clears New Test/2019 LDA Conference/Polly Murray/TBDWG Summary/US House Actions/Ticks Kill Cows




Conf. Early Reg. Extended /NY Times/New Legislation/Working Group/Town Hall Meeting/Genetic Link?




Lyme Book Release/ Congressional Investigation Request/ LDA Guest Blogs/Upcoming TBDWG meeting/Tick Bite Prevention Resources




New LDA Website/Congressional Town Mtg./May Awareness Guest Blogs/Fallon Interview & Book Award/Lyme Innovations Report




Conference & Scholarship info/Cong. Smith Lyme Testimony/Lyme Video/NIH Input/Researcher $$$




Save the Date, LDA Conference!/LDA Celebrates 50/LDA State Legislation Table Updated




Happy New Year! /Lyme Case Maps/New Research/2018 Achievements

 
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 2018.
 Let’s continue to work together in 2019 to find a cure.

 
Lyme Disease Association: Volunteers in Action—Stop Lyme
12/30/2018

When Deciding on Year End Giving,
Check out Lyme Disease Association Inc.
 
 
How long has it been in existence?
LDA since 1991
 
 
What % of income goes directly to programs?
LDA approximately 96%
 
 
Does it provide a list of its accomplishments?
LDA website lists research grants, peer review science supported by LDA that has been published in 48 journal articles, educational grants, LymeAid 4 Kids grants, support for legislative issues, education conferences including 19 CME conferences for physicians/researchers, printed brochures mailed for postage only, doctor referral, school issues, annually updated maps and g raphs on the spread of Lyme disease, and other free material and videos.
 
 
Does its programs accomplish what is necessary for patients?
LDA programs provide monies for research, education, prevention, and patient support including advocacy.
 
 
Is its information reliable?
LDA has been a national member of the Combined Federal Campaign for 13 years (#11424), a Guidestar gold member, and a 10-year partner in the Environmental Protection Agency’s Pesticide Environmental Stewardship Program to reduce the potential health and environmental risks associated with pests (ticks) and pesticide use.

 
 
 
Watch VIDEO: LDA President on Giving
 

 
Look what we have achieved with your support! 
 

LDA-Funded Research Recognized in 48 Journals
In 2018, LDA had its funded research published in two more scientific journals, bringing its total to 48 journal articles which contain research supported by LDA. Drs. Keilp, Fallon, et al, published Neurocognition in Post-Treatment Lyme Disease & Major Depressive
 
 
 
 
LDA provided 3 new research grants in 2018: Effie E. Bastounis, PhD, University of Washington; Nicole Chinnici, Lab Director, Northeast Wildlife DNA Laboratory (Pike County Commissioners-PA); and Christine Ann Denny, PhD, Columbia University .
 
Photo: Longicornis tick, also know as longhorn tick. Thanks to J. Occi, Rutgers
________________
 
 
LDA 19th Annual Continuing Medical Education (CME) Scientific Conference for Physicians & Researchers Jointly sponsored in Providence, Rhode Island, by Columbia University, 22 conference faculty presented to doctor/researcher attendees from across the US. LDA provided conference scholarships to medical students/others. Steven & Alexandra Cohen Foundation and IgeneX Labs provided support for the conference.  LDA Conference
________________
 
 
LymeAid 4 Kids Fund (LA4K) Since 2004 program inception, LDA has awarded $345,400 to families for children to get diagnosed/treated for Lyme & tick-borne diseases. In 2018, LDA awarded $7,000 in funds, 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
________________
 
 
Education & Scholarship Grants LDA has provided 203 education & conference scholarship grants to date. In 2018, LDA awarded education grants to the Colorado Tick-Borne Diseases Awareness Association’s 3rd Rocky Mountain Lyme Forum; the 4th Midcoast Maine Lyme conference for the public; to Lyme Association of Greater Kansas City; Lyme West NY; VTLyme.org; and NE Ohio Lyme Foundation . Education Grants
________________
 
 
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 program 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
________________
 
 
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

logo
LDA President
  • was selected as a public member by Health & Human Services (HHS) on the first Tick-Borne Disease Working Group, which just produced the first report to Congress
  • was invited participant by HHS at the first Lyme Innovations DC meeting to bring together diverse groups to help government solve the problems associated with Lyme disease.
  • serves as a member of the Department of Defense Congressionally Directed Medical Research Programmatic Panel which awards research grants on tick-borne diseases

 
Please remember
for end-of-year gift giving. Your support ensures continuation of our programs.
 
LDA has achieved GuideStar’s Gold level status: Commitment to transparency.
96% of donations go directly to LDA programs.

 
Raise $$$ for LDA While You Shop

 
Link your Amazon account to the Lyme Disease Association, Inc. A portion of the purchase price will be donated to LDA.
 

 
Create an account & button. Choose the Lyme Disease Association, Inc. Shop at 1800+ online stores. ~3% of purchase is donated to your cause.
 

 
888-366-6611 Toll Free Info Line

 



Double Your $$ on Giving Tuesday; Conference Photos; WG Report Released; Lyme Innovation; Dr. Legislation

LDA NEWS & UPDATES 
November 2018

DONATE TO LDA ON FACEBOOK ON TUESDAY DOUBLES YOUR SUPPORT FOR LYME/TBD!
 
In support of #GivingTuesday on November 27, 2018, Facebook partners with PayPal to match donations made on Facebook to eligible US-based 501(c)(3) nonprofits.
 
The Lyme Disease Association Inc. (LDA), a 501(c) (3), began locally in 1991 with patients & family members and became a national non-profit providing funds for research, education, prevention and patient support.
 
LDA has no paid employees or paid office space, but has technical consultants─ enabling 97 cents of every dollar received to go directly to programs. On Giving Tuesday, donations up to $250k per nonprofit and $20k per donor are eligible to be matched — starting 5am PST/8am ET, November 27, and Facebook/PayPal will continue matching donations to nonprofits until the $7M match runs out. Your contribution to LDA in that time will make double the impact, whether you donate $5 or $500.
 
·     Help LDA continue to fund research nationwide─research which has already appeared in 47 journal articles–and to host an annual scientific conference for physicians.
 
·     Help LDA support our children through the LymeAid 4 Kids fund─grants for struggling families with children who need medical help. 
 
·     Help LDA provide educational materials on Lyme & tick-borne diseases, available on line or in print, and educational programs for the public and schools, including working with school nurses & educators.
 
·     Help LDA ensure government officials are educated to make policy decisions which allow doctors to diagnose and treat and which explore ways to control tick populations.
 
·     To learn more about LDA accomplishments go to www.LymeDiseaseAssociation.org
 
———————————————–
 
HOW TO DONATE
 
·       Click and Donate : Go to LDA’s Facebook Page  on Nov 27th and click on the donate button. Your donation will be doubled.
 
You can also donate directly on the LDA website using our donation form .*
*Donations made on our website will NOT be doubled.

Conference Sold out & Successful! Photos
 
The 19th annual LDA/Columbia CME conference in Rhode Island October 27 & 28 was sold out and was a great success. The 22 speakers covered topics ranging from many facets of Lyme disease and other tick-borne diseases to ticks, including the new invasive longicornis. A “newly rediscovered” old antibiotic and its effects on Lyme disease was discussed by Kim Lewis from Northeastern University. Prevention was also included and the use of new technologies to potentially control ticks and disease spread. Several collaborations are already under discussion among conference participants.
 
 
 
Photo: Pat Smith, President, Lyme Disease Association & Brian Fallon, MD at LDA/Columbia Annual Scientific Conference (LDA file photo)

Nov. 14: HHS Tick-Borne Disease Working Group Announced Release of Report to Congress; CDC Announced Higher than Ever Lyme Disease Cases
 
In a release long awaited by the Lyme community, the US Department of Health & Human Services announced today that the federal Tick-Borne Disease Working Group (WG) issued its first report to Congress, the Secretary of the Department of Health & Human Services, and the public—with 2 more reports to follow over the next four years.
 

LDA President Invited to Attend First Lyme Innovation Initiative Meeting
 
On December 4th at HHS Headquarters in Washington DC, a meeting of the federal government and other government levels, industry, academia, and non-profit organizations will convene to discuss a strategic approach to tick-borne diseases. 
 

Illinois Passes Doctor Protection Legislation

Raise $$$ for LDA While You Holiday Shop

Link your Amazon account to a charity. Amazon will donate a portion of the purchase price to Lyme Disease Association, Inc.

Create an account & button, then shop at over 1800+ online stores. On average 3% percentage of purchase is donated to your cause, please choose the Lyme Disease Association, Inc..

888-366-6611 Toll Free Info Line

 



Bad News from CDC; Advocates Meet; New Bart Test

LDA NEWS & UPDATES 
November 2018

2017 Tick-Borne Disease Numbers are Out: The News is Not Good
Although the numbers of tick-borne diseases have been out several days on CDC’s Wonder platform, a new data set format for tick-borne diseases has just been introduced today by CDC for 2017. It includes much pertinent information including the state numbers, state incidence map and rate, rate per 100,000 by age group, by race, by ethnicity, by sex, for Lyme disease–alll which will be in an easy layout to follow. Other TBDs totals are also there. Something the LDA has requested since last year, a disclaimer, has been made on the map concerning MA. MA has changed its reporting so that it relies primarily on lab reports, so it has not been able to have most of its numbers reported out by CDC as it does not meet the case definition set by the Council of State & Territorial Epidemiologists (CSTE). A similar disclaimer should be made for NY. CDC will be releasing more information early next week.
 
2017 reported case numbers for Lyme, 42,743, is appears to be the largest total reported by CDC. Considering the disease is underreported by a factor of 10,that means 427,430 cases occurred in the US in 2017.
 
CDC Results show a record number of tick-borne diseases.

The LDA has listed the states in rank order for Lyme disease incidence by state for 2017 for states CDC classifies as high incidence states:
1. ME (106.6), 2. VT (103.6), 3. PA (72.2), 4. NH (71.2), 5. RI (56.2), 6. DE (43.8), 7. NJ (40.3), 8. CT (38.5), 9. WI (31.0), 10. WV (27.7), 11. MD (19.7), 12. NY (17.6), 13. VA (12.3), 14. DC (8.9), 15. MA (4.7)
LDA has listed states in rank order for Lyme disease reported case numbers by state for 2017:
1. PA (11,900); 2. NY (5,155); 3. NJ (5,092); 4. WI (3,000); 5. MN (2,318); 6. CT (2,051); 7. MD (1,891);  8. ME (1,850); 9. VA (1,657); 10. NH (1381); 11. VT (1,092); 12. RI (1,132);   13. WV (648); 14. DE (608); 15. NC (295)
LDA has listed top 10 age groups in rank order for Lyme diseases reported cases for 2017:
1. 60-64 (3,836); 2. 55-59 (3,717); 3. 5-9 (3,536); 4. 65-69 (3,479); 5. 50-54 (3119); 6. 10-14 (2,953); 7. 40-44 (2,886); 8. 70-74 (2,594); 9. 45-49 (2,447); 10. 15-19 (2098)
CDC Links to data:

Providence, RI: Advocates Have Annual Meeting
The Lyme Disease Association’s Advocate dinner held Friday evening October 26 prior to the LDA/Columbia CME conference was well attended with group representation from Rhode Island, Connecticut, Massachusetts, Maryland, Colorado, Pennsylvania, New Jersey, Vermont, California and Maine.
You can read more about the meeting and find out how things get done here .

IGeneX Inc. Introduces Newly Developed, Highly Sensitive Tests For Rapid Diagnosis of Bartonella Infections
IGeneX unveiled their newly available Bartonella Western Blots and the Bartonella IgXSpot tests. Per IGeneX, “These new tests are more sensitive, inclusive, and specific than currently available assays and will provide a diagnosis within just a few days.”

#GIVING TUESDAY: SUPPORT RESEARCH FOR LYME CURE
On November 27th, the LDA kicks off their end of year “Find a Cure Campaign” by participating in the global #GivingTuesday movement to support research leading to a cure for Lyme and other tick-borne diseases. 
Giving Tuesday, held annually on the Tuesday after Thanksgiving, is a global day of giving that unites the power of individuals, communities, and organizations to encourage philanthropy and to celebrate generosity worldwide.
LDA has a strong record for funding Lyme research that leads to real results. Please join us on Giving Tuesday, make a small contribution, share with family/friends and help support Lyme research to find a cure!
We Value your Hard Earned Money & Will Invest Wisely!
LDA will provide more information closer to the date.

888-366-6611 Toll Free Info Line

 



Lyme Conf.: Register Now Before $ Increase/NBC 10 News Lyme Video/Testing Paper/Big Data

LDA NEWS & UPDATES 
October 2018

NBC 10 News Features Two Chronic Lyme Patients & LDA/Columbia Conference
 
The Lyme Disease Association/Columbia University’s upcoming Lyme CME scientific conference received TV coverage on NBC 10 News Rhode Island, on October 22, 2018. The segment, Health Check: Raising Awareness about Tick-Borne Diseases, was reported by Barbara Morse Silva.
 
Interviewed were two local sisters, Mary Lorusso-DiBara and Darlene DiBara O’Connor who have struggled for years with symptoms of Lyme and co-infections, as well as with finding proper diagnosis. With treatment, both have felt enormous relief of symptoms, but must remain under medical care. The sisters advocate for more research and more doctors who are willing to treat chronic symptoms. In the interview, they stressed that there are many symptoms associated with tick-borne diseases, and the symptom list is as long as the problem is big. They hope that the upcoming Lyme Disease Association conference on October 27-28 in Providence will be “eye opening.”
 
“There’s a lot of misinformation out there and this conference, in particular, it’s a scientific conference,” said Lorusso-DiBara. She added, “Real change is going to happen with doctors and other scientists talking with one another.”
 
 

Conference Rates Increase Beginning Friday, 10/26!
 
At the door registration is limited by space
 
Take advantage of lower conference rates by 11:59pm EST Thursday 10/25
 
The Lyme Disease Association & Columbia University’s 19th annual CME scientific conference, Lyme & Tick-Borne Diseases: Turning the Corner Through Research, will be held October 27 & 28, 2018, Marriott Providence Downtown Hotel, Providence, RI.

IDSA Publishes Lyme Testing Shortcomings
 
An article regarding Lyme testing was published in the Infectious Diseases Society of America (IDSA) journal, Clinical Infectious Diseases, on October 11, 2018.
 
The article, Direct Diagnostic Tests for Lyme Disease, addresses the longstanding issue of flawed Lyme disease testing, and states, “The 1994 serodiagnostic testing guidelines predated a full understanding of key B. burgdorferi antigens and have a number of shortcomings.”
 
“These serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable. New approaches have effectively been applied to other emerging infections and show promise in direct detection of B. burgdorferi infections.”
 
These findings came out of a meeting organized last year by Steven Schutzer, a physician-scientist at Rutgers New Jersey Medical School, at Cold Spring Harbor Laboratory’s Banbury Center, NY. This meeting resulted in an analysis published last year in Clinical Infectious Diseases which focused on new scientific advances in testing. 
 
This meeting acknowledged that new more accurate tests for Lyme disease are available. 
 
The journal article indicates that new data and technology are available and that “continued reliance on serologic testing for early Lyme disease is suboptimal.”
 
Photo: Steven Schutzer, MD, Rutgers University, lead author

New Journal Publication on Big Data & Chronic Lyme
 
Authors: Lorraine Johnson, MyLymeData; Mira Shapiro, Analytic Designers LLC; and Jennifer Mankoff, Paul G. Allen School of Computer Science and Engineering, University of Washington
 
Photo: Lorraine Johnson, MBA, JD, CEO – LDo
 

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