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2007

Lyme Disease Association Archives: 2007

Photo_2007_020.jpg (47075 bytes)(L to R) Pat Parke, Public Health Educator, Rockland County Department of Health; Pat Smith, LDA President; an LDA volunteer at Rockland County Vector-Borne Disease Advisory Committee meeting in Rockland County, NY in September 2007. Ms. Smith presented an update on the spread and impact of Lyme disease across the country to the Advisory Committee.
Federal Lyme Bill HR 741: Congressman Smith helped us by introducing the Lyme bill. Let’s help him to get this bill passed!
Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007

This bill was introduced into the US House of Representatives on January 31, 2007 by Congressman Christopher H. Smith (NJ). The bill is identical to last year’s House bill (HR 3427) except for updated dates in the bill. We need your help now. Click on the link to get information on the Smith/Stupak bill, (history, co-sponsors, who to contact). Lyme disease desperately needs the $100 million over 5 years that this bill provides for research, physician education, prevention, and task force formation.

Federal Employees: LDA CFC Eligible GOOD NEWS!
The LDA has been found eligible for inclusion on the National Part of the 2007 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 2007 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 CFC campaign (2006 # was 9351) and thanks all those who are contributing.]
New LDA Partner: On the ice, his focus is stopping hockey pucks; off the ice, his focus is stopping Lyme disease
Nolan Schaefer, a goal tender recently acquired by the Minnesota Wild hockey franchise is partnering with the Lyme Disease Association and also the Canadian Lyme Disease Foundation to raise awareness about Lyme and funds for Lyme disease research. 
National Association Announces Eastern Connecticut Lyme Chapter
Eastern counties high in disease, low in awareness, says new LDA chapter chair

NORWICH, CONNECTICUT, November 26, 2007–The national Lyme Disease Association (LDA) announces the formation of the Lyme Disease Association, Eastern Connecticut Chapter (LDAECC), bringing the current total of LDA-associated organizations nationwide to 31.

Minnesota Lyme Action Support Hosts National Lyme President
The Minnesota Lyme Action Support Group will host nationally recognized speaker Pat Smith, President of the national Lyme Disease Association, Inc. (LDA). In three separate forums, Ms. Smith will present an overview of Lyme disease issues to elected officials from the Twin Cities and Forest Lake at a by-invitation only Mayor’s Forum on Tuesday morning, November 13. A free community forum will be presented on Tuesday evening, November 13, and a forum for chiropractors will be Wednesday, November 14. 

Children of Lyme Town Hall Meeting, Sat., Oct. 20, 2007, 11:00 AM
Children are invited to tell their own Lyme stories. Time for Lyme Co-President Diane Blanchard will speak on behalf of the national Lyme Disease Association on the problems affecting children with Lyme. Manorville Firehouse, 16 Silas Carter Rd., Manorville, NY 11949 (Suffolk County). For more information about this event hosted by community leader Keith Romaine, please contact Empire State LDA President Eva Haughie at
Eva@EmpireStateLDA.org or phone 631-878-6657 begin_of_the_skype_highlighting              631-878-6657      end_of_the_skype_highlighting
San Diego Lyme Support Group Information Item – California
Lyme Patients And Community WALK to Improve Diagnosis and Treatment

People suffering from Lyme disease, along with family and friends, will hold a walk and candle lighting ceremony near the San Diego Convention Center on Saturday, October 6. In addition to calling attention to the suffering caused by the tick-borne illness, they’ll be raising funds for much needed research to improve the diagnosis and treatment of Lyme Disease. Brooke Landau, lyme disease survivor and traffic anchor for ABC channel 10 news San Diego, will be the celebrity hostess for this event. They are also trying to call attention to being excluded from what’s going on inside the convention center—the annual conference of the Infectious Diseases Society of America (IDSA).

Empire State Lyme Disease Association Partners With US Senator Chuck Schumer
Manorville, NY, October 16 – The Empire State Lyme Disease Association, affiliate of the national Lyme Disease Association, is very pleased to announce the addition to our Board of a staunch advocate and supporter of Lyme patients both here in New York and across the US. We extend a heartfelt welcome to US Senator Chuck Schumer (NY) who has consented to become an honorary board member of Empire State Lyme Disease Association, Inc. (ESLDA)
Texas Lyme Disease Association, affiliate of Photo_2007_TXLymeRyde_001.jpg (28687 bytes) the Lyme Disease Association, holds LymeRyde
Register NOW! LDA’s 8th annual Lyme & Tick-Borne Diseases Conference
Jointly sponsored by Columbia University & Lyme Disease Association: Bridging the Medical Chasm
October 26, 2007, Boston, Massachusetts, 8.75 category 1 CME credits (see flyer)
Presenters include CDC’s Dr. J. Livingood, whose 2006 paper concludes that the “invasion of neural cells by B. burgdorferi provides a putative mechanism for the organism to avoid the host’s immune response;” Finland’s Dr. Hetta Yrjanainen whose study shows viable Bb after Ceftriaxone therapy in mice, and Dr. Katherine Feldman and her work with Tularemia. The day will conclude with a 70 minute presentation with rebuttals on the two standards of care for Lyme disease: ILADS and IDSA, from Dr. Ray Stricker, President, ILADS, and Dr. Paul Auwaerter from Johns Hopkins University.
CALDA offers grants for doctors to attend LDA & ILADS conferences.
Lyme Disease Town Hall Meeting, Riverhead NY
August 30th from 5:30 pm to 7:30 pm at 310 Center Drive, Riverhead in the Suffolk County Legislative Auditorium at the County Center. With the assistance of the Empire State Lyme Disease Association, Legislator Romaine (631-852-3200 begin_of_the_skype_highlighting              631-852-3200      end_of_the_skype_highlighting) has assembled a panel of experts on Lyme disease treatment and prevention to discuss this debilitating disease. Members of the public are invited to share their own experiences as well.

The Guest Speakers include Pat Smith, President of the national organization, Lyme Disease Association; Dr. Joseph J. Burrascano, MD, Author of Diagnostic Hints & Treatment Guidelines for Lyme & Other Tick Borne Illnesses; Sandy Berebaum, LCSW, BCD, a Lyme-literate psychotherapist; Dr. Ruggiero, D.O., a practicing Lyme physician in Suffolk County; Cheryl Viserto, a founding member of the Lyme Induced Autism Foundation; Humayun J. Chaudhry, Suffolk County Commissioner of Health Services; Staci Grodin, Founder of Turn the Corner Foundation, an organization that funds Lyme disease research; and Karen Hassan, “How a family is affected by Lyme disease.”

Lyme Disease Awareness Walk 
To Be Held in Maine 9-22 to Benefit LDA
A group of Maine residents spearheaded by Lyme patient, Jessica Plantanitis, will host a Lyme Awareness Walk in Wells, Maine, on Saturday, September 22, 2007. Registration begins at 9am and the walk at 10am. See
http://lymediseaseawareness.com for details and contact info for the walk. All proceeds will be donated to the Lyme Disease Association. 
Photo_2007_018.jpg (37346 bytes)CSTE Meeting
Dr. Daniel Cameron and LDA President Pat Smith in windy Atlantic City for the CSTE meeting in June. They attended and spoke at the meeting against the adoption of the then proposed CSTE surveillance guidelines which would limit the use of the EM rash for diagnostic criteria in non-endemic areas by also requiring a positive test. The Council of State and Territorial Epidemiologists passed the new guidelines after discussion and despite input by Cameron and Smith discussing the damage this new criteria would have on numbers and patients. The LDA, ILADS, and numerous Lyme groups nationwide have signed onto a letter opposing the adoption of these guidelines by the Centers for Disease Control & Prevention.

Photo_2007_017.jpg (38457 bytes)
West Milford Township
West Milford Health Nursing Supervisor Bobbie Del Sol (L) and professor Doris Aaronson (R) New York University, with LDA president Pat Smith, who spoke to a standing room only crowd in the West Milford, NJ, Municipal Building about Lyme disease and other tick-borne diseases. The presentation was arranged by Professor Aaronson and sponsored by West Milford Township Public Health Nursing Division, Passaic County.
LDA to speak in Vermont
For the fourth year, the Lyme Disease Association will be speaking at Burr and Burton Academy in Manchester, Vermont on Friday August 3, 2007. The LDA president will speak about the spread of Lyme and what is being done. Dr. Brian Fallon, Columbia University, will speak about the newly opened Lyme & Tick-Borne Diseases Research Center opened this year at Columbia University by the LDA and Time for Lyme. Dr. Dan Cameron, Mt. Kisco, will talk about Lyme disease diagnosis and treatment. It is free and open to the public. For additional information on the Symposium, call Dr. Stephanie Woolwich-Holzman, 802- 375-9360 begin_of_the_skype_highlighting              802- 375-9360      end_of_the_skype_highlighting or Rev. Claire Longtin North, 802- 375-6064 begin_of_the_skype_highlighting              802- 375-6064      end_of_the_skype_highlighting

Ms. Smith will also speak to the riders of Gear Up for Lyme, a bike race up Mt. Equinox hosted by the Manchester Rotary on Saturday, August 4, 2007. The Rotary splits the proceeds of the race between the LDA and their own charities. Visit www.gearupforlyme.com or contact Andy Holzman at 802-362-0273 begin_of_the_skype_highlighting              802-362-0273      end_of_the_skype_highlighting for race details. 

New Year’s News
Rebecca Wells Joins Other Notables on LDA Honorary Board 
The LDA welcomes Ya-Yas author Rebecca Wells to the LDA’s Honorary Board and its Literati with Lyme Effort.
All Lyme disease groups: 
The LDA has adopted the following resolution on revocation of the IDSA guidelines and we ask that you adopt it at your next meeting. Change only using your group name and date in the Resolved clause. Support groups can adopt this, too. The group president, chairperson, director, or leader should put his/her name under a clean copy of the resolution you adopt and send the LDA the adopted copy by email to
Lymeliter@aol.com. We will publicly use these resolutions in the national campaign to get these guidelines revoked.
LDA Partners with IDEXX Laboratories to Stop the Spread of Lyme and Other Tick-Borne Diseases in People and Pets
Photo_2007_001.jpg (39875 bytes)Pat Smith, President, LDA, with Dr. Matt Eberts, DVM, Lakeland Veterinary Hospital, Baxter Minnesota. Ms. Smith attended Dr. Eberts’s presentation on Tick-Borne Infections: The Basics at NAVC (North American Veterinary Conference) in Orlando, Florida, January 15, 2007. Dr. Eberts spoke about Lyme disease and the unexpected rise in cases of anaplasmosis in dogs in his Minnesota-based practice. Anaplasmosis is a Lyme disease co-infection carried by the same ticks that carry Lyme and can infect both people and pets, including dogs, cats and horses. Dogs are sentinels for Lyme disease and are 50 to 100 times more likely to be diagnosed with Lyme disease than their owners. When canine Lyme disease incidence is on the rise, human case numbers generally follow since people share the same space and activities as their pets.
LDA List of Events, Spring 2007
Sanjukta Gayen and LDA president Pat Smith at Photo_2007_014.jpg (40224 bytes) AT&T headquarters in NJ. Dr. Gayen arranged for Ms. Smith to present a lunch and learn for employees at the headquarters at one of LDA’s spring Lyme disease presentations.

 
Professor Eva Sapi, University of New Haven, Photo_2007_015.jpg (33805 bytes) and Pat Smith, LDA President, with Connecticut TV host Ray Hardman of Front & Center.  Dr. Sapi and Ms. Smith appeared on the show to discuss the need for the then upcoming University of New Haven Lyme Disease Seminar, organized by Dr. Sapi.  Ms. Smith was one of the speakers.
 
LDA President Pat Smith and Connecticut Photo_2007_008.jpg (29213 bytes) State Representative Jason Bartlett (Bethel,Danbury,and Redding) at the recent University of New Haven Lyme disease conference. Both spoke at the conference about issues on tick-borne diseases. Mr. Bartlett had introduced a bill into the Connecticut legislature to restore mandatory lab reporting in Connecticut after CT cases decreased by 70% when mandatory lab reporting was dropped by the CT DPH. LDA, which favors restoration, submitted testimony favorable to the bill, which had a hearing with all favorable testimony but was not brought up for a Health Committee vote. 
LDA Across the USA
Photo_2007_016.jpg (36540 bytes)Former Lyme Association of Greater Kansas City (LAGKC) President Ed Olson and his wife Lois, met in NJ in May with LDA President Pat Smith (C). They discussed issues of Lyme disease in the Midwest and efforts to raise awareness in that area. LAGKC is an affiliate of the LDA.
June 11th Lyme Disease Forum7:30 PM, Open to Public, free, Sponsored by town of West Milford
Town Hall Meeting Room, 1480 Union Valley Rd., West Milford, NJ
Pat Smith, President, LDA Lyme Disease: Up-to-Date Overview of Lyme & Tick-Borne Diseases & Children’s Issues 
HR 741 has another co sponsor!
Photo_2007_007.jpg (33317 bytes)L to R: Christiane Berkel (Sewill.org support member) and PJ Langhoff (Sewill.org founder) meeting with Rep. Tom Petri, (R) 6th Congressional District (Wisconsin) to apprise him of Lyme disease issues. The Representative agreed to co-sponsor HR 741.
May 19th Current Trends in Lyme Disease Research Open to Public, registration req. (flyer)  Link to sign up: www.unh-lyme.org
Sponsored by University of New Haven, Connecticut 
Pat Smith, President, LDA Lyme Disease: An Overview of the Impact & What is Being Done About It
May 9th Community Education, Health Promotion & TBD Prevention Open to Public, free (flyer)
Sponsored by Mrs. Nancy Braithwaite School Nurse & Lyme Support Group Leader
nbraithwaite@wtschools.org
Our Lady of the Church Schooley’s Mountain Rd. Long Valley, New Jersey
Pat Smith, President, LDA Lyme Disease: An Overview of the Impact & What is Being Done About It
Michigan Presentation
Patricia Compton, a volunteer for the LDA, met with the Chronic Illness Coalition (CIC) in Southfield, Michigan on May 2nd, 2007. The CIC is a group of people who represent both for profit and not for profit organizations that support people with chronic illness in Michigan. Of the 30 people in attendance, 11 knew of someone in the Michigan area who had experienced Lyme disease. They commented that little was known about Lyme disease and it was difficult to find physicians to treat the illness appropriately. The presentation was a part of the group’s bi-monthly meeting held at the Multiple Sclerosis Society in Southfield. 
Lyme Disease Association’s & Time For Lyme’s Joint Venture
Proposed Endowed Chronic Lyme Disease Research Center At Columbia University
LDA President Presents Lyme Disease to Middle Schoolers and to Staff
Photo_2007_004.jpg (31988 bytes) LDA President Pat Smith (C) at the Clear Run Intermediate School in Tobyhanna, PA. Ms. Smith presented a staff inservice on Lyme and other tick-borne diseases followed by 2 assemblies to the student body on Lyme disease, ticks, and protection. About 1200 6th and 7th graders heard the presentation. Monroe County, where the school is located, is on the high risk list for Lyme disease for counties in Pennsylvania. Joanne Bohrman (L) is the teacher who organized the presentation and along with Marlena Middleton (r) developed a pre and post test for the students.
Corning New York PTA Presentation
The Lyme Disease Association will provide an in-service to the Severn Elementary School PTA, Corning , NY, on Tuesday, April 17, 2007, at 6:30 pm. Lis Heininger, ReD, will be the presenter of this training session which will provide an overview of Lyme disease followed by a question and answer period. For info, contact PTA President,
niffer@stny.rr.com.
Thanks to All!
LDA, Maryland groups, and patients thank you for your efforts in defeating the Maryland Lyme disease bill, HB 836. It died in the Senate Education, Health and Environmental Affairs Committee without the committee taking action, so it never went to the full senate for consideration, as was the plan. 

Pat Smith, LDA President, and Ron Hamlen, a member of the LDASEPA board and a Maryland resident, testified against the bill at the hearing, and many others submitted written testimony. Hundreds of patients and groups nationwide reacted with emails and phone calls against the bill after the sponsor testified before the committee, citing that only one group was in opposition and “fear” as the reason the patients opposed the bill. It was an awesome grassroots effort that culminated in success for patients. Special thanks to Jean F. Galbreath, President of the Harford County Lyme Disease Support Groups, Inc., an LDA affiliate, and the Lyme Disease Education and Support Groups of Maryland for leading the effort.

Do you live or work in Maryland? 
STOP HB 836 now before it STOPS your Lyme treatment!
You need to take action now. The Maryland Delegates voted for a bill that mandates the Maryland Department of Health to disseminate “latest consensus guidelines” (read IDSA) to physicians in Maryland. HB 836 is now moving to the Senate Education, Health and Environmental Affairs Committee for a hearing/vote on April 4. If it passes here, these guidelines may prevent Lyme patients from getting further treatment and those just bitten from getting a diagnosis. Stop it now while you can. Contact the Senate Committee members TODAY; don’t wait!!

 

 

Maryland Delegate Montgomery Introduces Awareness Bill HB 836 in March 2007
Photo_2007_006.jpg (23694 bytes)LDA & most Maryland Lyme Disease Groups only support it if amendments are added. 
See LDA
testimony
for details.