Lyme Disease Association

LDA & TFL ENDOW CENTER
http://www.columbia-lyme.org/

Read About: April 30, 2007 DREAM TO REALITY

LDA/TFL
Our goal is reached!
The Columbia Lyme & Tick-Borne Diseases Research center is open!!
(This center is for research PURPOSES & CURRENTLY does not see patients)

CONNECTICUT DOCTOR PROTECTION BILL FOR LYME SIGNED BY GOVERNOR RELL
JUNE 21, 2009 − Patient groups across Connecticut and the nation are elated by the June 21 announcement by Connecticut Governor Jodi Rell that she has signed the Lyme disease doctor protection bill, following its recent unanimous passage in both houses of the Connecticut General Assembly.

SAVE THE DATE! October 23, 2009
LDA's 10th annual scientific conference
Lyme & Tick-Borne Diseases: Thirty-Four Years, From Lyme, Connecticut Across the Nation
To include the first Edwin Masters, MD Memorial Lecture
Gaylord National, National Harbor, Maryland
7:30am-6:45pm, followed by networking reception.
Details and registration soon.

LDA Salutes Russ Cornelius!
American Red Cross, 2009 Heroes of Western Connecticut

Russell Cornelius-Community Health Impact Award
Brookfield, CT resident Russ Cornelius is an advocate for tick-borne disease education and awareness. Russ is a founding member of the Brookfield Lyme Disease Task Force and as the part of a Brookfield Rotary project he helped promote a First Aid Kit for Tick Removal and helped implement a Lyme disease education program, Time For Lyme, Inc Curriculum., that is now part of Brookfield's education program. Russ has also helped bring LDA educational awareness programs to Connecticut. Countless people are better equipped to prevent, prepare for and respond to tick-borne related emergencies, thanks to his relentless efforts and impact to provide knowledge of Lyme and other tick-borne diseases.

Lyme Disease in Tennessee

LDA President Pat Smith with Michael Schulz, Field Representative for Lamar Alexander after a meeting in the Senator's Nashville Office on Lyme and other Tick-borne diseases in Tennessee.

Pat Smith, LDA President (R seated) and LDA volunteer Rich Smith (L seated) with some of the Tennessee Lyme patients and activists with whom she met about the problems facing patients nationwide and in Tennessee.

The Lyme and Tick-borne Diseases Research Center at Columbia University NEW WEBSITE
For patients and families, physicians and researchers in need of information about chronic Lyme disease. A powerful and credible source of Lyme-related materials, it represents the only academic research center in the country to focus multidisciplinary research on chronic Lyme. Synonymous with the Center's mission, the website offers up-to-date resources, new research results from Columbia University and elsewhere, frequently asked questions, an "ask the doctor" section (most popular to date), and commentary on important events in the Lyme world. Feedback on the site is welcome.

CT bill passes Senate. Goes to Governor
Patient groups across Connecticut and the nation were jubilant as the Connecticut Senate passed the Lyme disease doctor protection bill today, 36-0, following its unanimous passage in the Connecticut House of Representatives on April 30, 2009.

Picture:

Dr. Betty Maloney, Minnesota; Tim Lynagh, Legislative Director for Congressman Christopher Smith (NJ-4); and Pat Smith, President, Lyme Disease Association; in the office of Congressman Smith (not pictured) after a meeting he hosted with officials from the National Institutes of Health. The meeting concerned research and education on Lyme and other tick-borne diseases, what NIH is doing, what advocates feel needs to be done to learn more about the growing epidemic.

Texas LDA asks for help from Texas Residents
Texas is rounding up and moving out to “Give Lyme the Boot”. A Concurrent Resolution, H.C.R. 152 was unanimously and enthusiastically voted out of committee on April 28, and referred to the House calendar for full consideration of an interim study of the status of Lyme disease in Texas. All Texas patients, family, friends and interested parties can support this effort here.

Connecticut Doctor Protection Bill Passes House
Connecticut Lyme groups and the national Lyme Disease Association, Inc. are pleased to announce that H.B. 6200, with a floor amendment by Representative Betsy Ritter et al., passed through the Connecticut House of Representatives.

LDA/34 Groups Submit Written Guidelines Challenge to IDSA panel
Present Patient Viewpoint
34 Lyme groups submitted a challenge to the IDSA guidelines in conformity with the IDSA settlement with Attorney General Richard Blumenthal (CT). Under the settlement, a newly selected IDSA panel formed under the auspices of an ethicist, solicited public input. Deadline for written public testimony was April 24. Additionally, a one-day public testimony period will be broadcast over the Internet.

Lyme_cases_total_1990to2006.gif (43174 bytes)

Lyme by the Numbers
While awaiting final 2008 numbers which are published by CDC in August 2009, you can check out all the reported numbers and incidence of Lyme by state and nationally since 1990 on a national map, or if you click your state on the map, you can find the case numbers on a table. You can also find an analysis of the 2007 numbers prepared by LDA.

NY Congressman John Hall's April 17, 2009 Press Conference, Dutchess County
Congressman John Hall hosted a press conference to raise awareness of Lyme and other tick-borne diseases in Dutchess, one of three highest counties in per capita Lyme cases nationally. Speakers were the Congressman (C), LDA President Pat Smith (R), Bill Mc Cabe (L), Dutchess County Legislator, and Hudson Valley LDA president, Jill Auerbach. Congressman Hall shared his concern over this increasing epidemic and discussed the many ways he is trying to encourage change on the federal level, including co-sponsorship of the "Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2009", HR 1179. Click here to view his press release.

Sussex County (NJ) Lyme Disease Support Group
Fight Against Lyme 2009, Saturday, May 30, 2009, 1:00pm-4:00pm
Please join the group for its first awareness event at Sacred Heart Spirituality Center, 20 Old Swartswood Road, Newton, NJ 07860. Education & fun for everyone! LDA President Pat Smith will be speaking and answering questions. Representatives from various health care related businesses will be there. There will be face painting and more. Email for further details.

Lyme Groups Testify in Hartford on Doctors' Right to Treat
Three of the Connecticut State Legislative co-introducers of HB 6200 (top L) Kim Fawcett; (2nd row 3rd, 5th from left) Jason Bartlett, Chris Lyddy; with (2nd from L) Maggie Shaw, Newtown Lyme Disease Task Force; (4th from L) Daniel Cameron, MD, President, ILADS; Karen Gaudian, Ridgefield Lyme Disease Task Force; Pat Smith, LDA president; and Kim Pappa, Eastern Connecticut Chapter, LDA. Other Lyme activists are also pictured.

The LDA and the Task Forces were in Hartford for meetings with legislators and to testify on the bill, HB 6200, in the Public Health Committee. The groups were favorable to the concept of doctor protection with some bill language changes.

Lyme in South

Regional Conference to Assess Research and Outreach Needs in Integrated Pest Management to Reduce the Incidence of Tick-Borne Diseases in the Southern US
Group workshop attendees at the Lyme in the South 3-day workshop at the CDC in Atlanta in January 2009. The conference was sponsored by the Southern Region Integrated Pest Management Center, Centers for Disease Control and Prevention, Bayer Environmental Science, Focus Diagnostics, Novozymes Biologicals, Inc. Click the picture for enlargement and identification.

LDA Speaks after UOS in Saybrook CT

(L to R) Kim Pappa, Lyme Information Network (LINK); Julie Ciucias, (LINK); Pat Smith president, Lyme Disease Association; and Jessica Naylor, (LINK), at a showing of Under Our Skin in Saybrook, CT on March 6. The showing was arranged by two seniors as part of a senior project at the High School and LDA was asked to speak about Lyme disease at the event. Kim Pappa is also Lyme Disease Association, Eastern Connecticut Chapter Chair.

Check out LDA research projects 1992-2009

LDA has awarded many grants over its lifetime. See a partial list here and the resultant publications and some of the conference presentations.

LDA Educates NY Congressman About Lyme
LDA president Pat Smith, LDA Corning Fingerlakes Area Chapter Chair Lis Heininger, and Jennifer Ruland aide to Congressman Eric Massa (NY) in Corning for a March 2009 educational briefing on Lyme disease issues.

LDA briefs Dutchess County Lyme and Tick-Borne Disease Task Force and NY Congressmen
The LDA was invited by the Dutchess County (NY) Lyme & Tick-Borne Disease Task Force to brief the Task Force and the invited Congressional offices on Lyme disease in New York and issues at the federal level. Pictured are NY State Assemblyman Joel Miller; Pat Smith, President, Lyme Disease Association, Inc.; Benedict B. McCaffree, PhD, Regional Representative from Congresswoman Gillibrand’s office; Rich Winters, Staff Assistant, Congressman John Hall’s office; Bill McCAbe, Dutchess County Legislator, and Dutchess County Lyme and Tick-Borne Disease Task Force; Patricia Valusek, Federal Liaison, and Gina Bisille, aide, both from Congressman Maurice Hinchey’s office.

LDA strategy for reduction to tick exposure accepted by EPA's PESP Program
LDA is part of the Environmental Protection Agency's Pesticide Environmental Stewardship Program (PESP) in an effort to reduce risks to pests, in particular, ticks, thereby reducing risks to tick-borne diseases. The thrust of this partnership with USEPA is to educate schools and families on the necessity of protection from exposure to ticks which may carry disease causing pathogens. This strategy includes developing tools to be used in schools and developing educational tools for people who have access to public lands for outdoor uses, i.e. walking, hiking. EPA has now accepted LDA's strategy.

Who are Most At Risk for Lyme Disease? Our Children!

LDA Introduces the FREE Educational On-Line Module: How A Tick Can Make You Sick
Designed for grades 6 through to adult, this 4 section slide show module in Adobe Presenter can be opened on the Internet or printed from the Internet. It contains pre and post tests and an audible pronunciation guide. A resource section is also included. The LDA is concerned that a 39% increase in Lyme cases occurred in 2007 and that children are at the highest risk of developing Lyme disease, so we offer this module free and urge its use by schools, scouts, park systems, and the public.

Lyme Disease Bill Held Back By Infectious Diseases Society of America (IDSA)
Click here for video from May 7th Lyme Rights protest at Congressman Pallone's Long Branch, NJ office

Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines
“My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists,” said Blumenthal. “The IDSA’s guideline panel improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

Radio interview with LDA president Pat Smith's broadcast today in NJ and surrounding states on Connecticut Attorney General Richard Blumenthal's announcement of settlement with IDSA on Lyme guidelines.

For use by any radio station -- Lyme Disease Guidelines settlement reached!
Interview by Pat Smith, LDA president, on Connecticut Attorney General Richard Blumenthal's announcement of settlement with IDSA on Lyme guidelines. This material can be used by stations everywhere. Contact Pat Smith President, LDA Lymeliter@aol.com for any other necessary info. (To play, click the link. To save, right-mouse click on the link and choose "Save Target As...".)

Federal Employees: LDA CFC Eligible GOOD NEWS for Lyme disease!
The LDA has been found eligible for inclusion on the National Part of the 2008 Combined Federal Campaign (CFC) Charity list. Each year, federal employees can contribute to charities that meet the requirements of the CFC. The LDA’s CFC 2008 identification for donors is #11424 and Lyme Disease Association, Inc. will appear in the listing of National/International Independent Organizations which is published in each local campaign charity list. See your federal employer for details. Check the CFC website at: http://www.opm.gov/cfc/. [LDA also made the 2006 & 2007 CFC campaign and thanks to all those who have been contributing.]

Lyme Groups Tell Congress About Lyme Controversy
LDA and its associated organizations faxed the following letters to Congress last week in response to a letter to Congress opposing the bills by IDSA.
LDA Senate Letter LDA House Letter

2007 Conference DVD now available!
Lyme & Tick-Borne Diseases: Bridging the Medical Chasm, Boston 2007
Includes Lyme Treatment Debate
Conference DVD now available featuring a dozen speakers on areas impacting tick-borne diseases including the debate, Treatment Controversies: Lyme Disease with Ray Stricker, MD (President, International Lyme & Associated Diseases Society) Treatment the ILADS Perspective; and Paul Auwaerter, MD, (Associate Professor in the Department of Medicine, Johns Hopkins University) Treatment the IDSA Perspective.

New Jersey Case numbers/rates by County
The reported numbers in this chart, which come from the NJ Department of Health, show a per county breakdown of Lyme disease cases in New Jersey by numbers of cases and rates of incidence from 2000-2006. The CDC has indicated that only 10% of cases that meet its surveillance definition are actually reported, thus true numbers may be 10 times higher than these reported numbers.

Author Rebecca Wells Speaks out on the Columbia University Lyme Research Center
Author Rebecca Wells on Lyme disease and the opening of the Lyme & Tick-Borne Diseases Research Center at Columbia University (5 minute video, the first two black screens have no sound)

View Mary McDonnell, star of the Peabody Award Winning TV show BattleStar Galactica in a PSA on Lyme Disease. Ms. McDonnell stars as President Laura Roslin in the popular sci-fi series. She has starred in a number of movies including her Oscar-nominated roles in Dances with Wolves and Passion Fish. She serves as LDA's national spokesperson on Lyme disease.

New IDSA Guidelines Effectively Stopping Treatment for Lyme Patients: SIGN PETITION HERE
The new IDSA guidelines published in October by the Infectious Diseases Society of America (IDSA) are already causing patients to be denied treatment for chronic Lyme disease. The guidelines have recommended against any long term treatments, listing numerous specific antibiotic classes not to be given, listing alternative treatments and even supplements not to be offered to Lyme patients. Clinical discretion has been removed from treating physicians. We ask that you, your families, and friends across the country sign this petition immediately. Lyme treatment is at stake.

Petition Information: The petition on this website is for those 18 years and older to sign. Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names, nor shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like many of you, LDA is all patients and families of patients ─ and all volunteer.

Other actions will be forthcoming. Please watch this site for details as our campaign for patients' right to be treated unfolds.

Statement from Pat Smith, President, Lyme Disease Association
Historic Move by CT Attorney General to Investigate IDSA Guidelines Process
Gives Hope to Thousands of Lyme Disease Patients

HARTFORD, CT Nov. 16 ─ The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Literati with Lyme Book Sale:
Buy books with signed bookmarks from the authors. Support LDA’s Lyme disease research and education efforts! Order Today.

Acclaimed Literati with Lyme Authors Amy Tan, Meg Cabot, and Jordan Fisher Smith are part of LDA’s Literati with Lyme team. Literati with Lyme is an effort by nationally-known authors, publishers, editors, literary agents, other publishing professionals, and the national non-profit Lyme Disease Association to raise awareness of this growing infectious disease threat and to raise research funds for a cure.

Lyme Disease Association introduces you to the lineup for: Literati with Lyme
For the first time, four nationally acclaimed authors and an executive editor are sharing the stage with two prominent medical authorities on Lyme for a firsthand account of the disease and its impact on peoples’ lives and livelihoods. Thursday, May 19, 2005, 7-10PM, the Lyme Disease Association (LDA) will host Literati with Lyme, a fundraising event at New York University, entitled “Writer’s Block of the Worst Kind.” The event is featuring Literati who have all had Lyme disease: Amy Tan (The Joy Luck Club and movie); Meg Cabot (The Princess Diaries series and movies); E Jean Carroll (advice columnist for Elle Magazine); Jordan Fisher Smith (Nature Noir: A Park Ranger’s Patrol in the Sierra); and Jennifer Weis (executive editor St. Martin’s Press).

New Book for kids with Lyme Disease - BUY BOOK ONLINE
Lyme Disease Is No Fun: Let’s Get Well! written by Mary Wall MS Ed, CCLS, a Columbia graduate student, edited by Colleen M. Smith, a peer-review medical journal production editor and Johns Hopkins grad─each has battled Lyme disease as a child. Author Amy Tan has written the back cover note. Published by Lyme Disease Association, Inc.

Lyme Disease Update Now Available
Lyme Disease Association, Inc., (LDA) announces the publication of Lyme Disease Update: Science, Policy, & Law, the first Lyme disease resource book of its kind. Marcus Cohen, noted columnist for the Townsend Letter for Physicians & Patients is the author of the Update. NY Times Bestselling Author Amy Tan has written the Preface from her personal perspective on the difficulty of getting diagnosed and appropriately treated for Lyme disease.

The book is a must for busy physicians who lack time to read the peer-review on Lyme disease and for patients who have been refused treatment or even a Lyme diagnosis, the doctor perhaps citing a negative test (the book documents seronegativity) or the patients’ lack of conformity to the CDC criteria, which are meant for surveillance purposes only─the reference is cited in the Update.

Lyme Disease Association News Archives