Welcome to the Internet Home of the Lyme Disease Society
The Lyme Disease Society is a Pennsylvania-based volunteer group, founded in 2000, dedicated to advocacy
on Lyme disease and other Tick-borne diseases education, prevention, research and patient issues.
In Memoriam, Mary M. Halinski
(1961-2013), Noted Patient Advocacy Leader,
Lyme Disease Society Co-Founder and Executive Director
Excerpts from 'Words of Remembrance' for his Mom written
and delivered by her son Luke at her funeral -
"My Mom's life was a most beautiful
Mosaic composed of many pieces: the people who my Mom impacted. Her life was an
extraordinary masterwork of love, with each unique piece, each person,
glistening in the special way Mom knew them, helped them, cared for them and
loved them. My Mom radiated a vibrant generosity of spirit and love that will
carry on always."
"Most of all, I know that now everyone
here has a new advocate for them in heaven."
Mary M. Halinski, 52, of Lansdale, PA, passed away Friday,
August 16, 2013, after extended health challenges from pancreatic
cancer. She was the beloved wife of Robert Halinski, her husband of 32 years,
and an amazing mother, sister, aunt and friend.
2020 Federal HHS Tick-Borne Disease Working Group Report
The 2020 federal HHS Tick-borne Disease Working Group Report to Congress and the Secretary of HHS, and other updated information, from the Tick-borne Disease Working Group (established by the 21st Century Cures Act) are available at the below official website.
HHS Federal Tick-Borne Disease Working Group (outside site)
Lyme Disease Society Supports HB 1033 in PA Legislature to Help Patients
Lyme Disease Society strongly supports HB 1033, sponsored by PA Representative Kathy Rapp, in the PA Legislature. HB 1033 (HB 629 last session) would help Lyme and Tick-borne disease patients by ensuring that they can receive appropriate medical care and insurance coverage for their treatment.
HB 1033 passed the PA House which is exciting news! The bill is now pending in the PA Senate. Thanks to everyone who has supported this bill!
If you live in Pennsylvania, contact your State Senator and ask them to support HB 1033. You can use the below link to find and contact your State Senator.
Pennsylvania Senate website (outside site)
Link to a copy of HB 1033 and bill information (outside site)
From December 2019: Victory! Kay Hagan Tick Act Passed by US Senate and House in Appropriations Package!
There is wonderful news as a very positive version of S 1657, Kay Hagan Tick Act, passed both the House and Senate as part of HR 1865, the Appropriations package. The bill now goes to the President for his signature. This is an important win in the fight against Lyme and Tick-borne Diseases! The bill includes a significant increase in funding authorization and also new coordination for federal efforts on Lyme and Tick-borne Diseases. Lyme Disease Society strongly supported this current legislation and had input during the legislative process. Congrats and great thanks to the Kay Hagan Tick Act bill sponsors Senator Collins and Senator Tina Smith! Thanks and appreciation go out to all of the bill's supporters in Congress, including Senator Alexander, Senator Casey from Pennsylvania, all of the Members who voted for the legislation, and the many House and Senate offices who were helpful and involved during the legislative process.
Previous Update - Exciting News: S 1657, Kay Hagan Tick Act, included in Appropriations Package!
There is exciting news as a positive version of S 1657, the 'Kay Hagan Tick Act', sponsored by Senator Susan Collins and Senator Tina Smith, was included in a year-end Appropriations package. If this larger package is passed by the House and Senate and signed by the President, the Kay Hagan Tick Act would become law. The bill includes an important increase in funding authorization and also new coordination for efforts to fight Lyme and Tick-borne Diseases. Lyme Disease Society supports the current version of the bill, which is similar to the HELP Committee version of the bill. Senators included Lyme Disease Society input on that Committee passed bill version. Thanks to Senator Collins, the bill's sponsor, for her leadership and longtime support of Lyme and Tick-borne Disease patients, and all of the bill's sponsors and supporters, including Senator Bob Casey from Pennsylvania.
Earlier Update: US Senate HELP Committee Passes Positive Version of Tick-Borne Diseases Legislation!
The US Senate HELP Committee passed by voice vote a very positive version of S 1657, the 'Tick Act.' The bill which passed Committee includes an important increase in funding authorization and also new coordination for efforts to fight Lyme and Tick-borne Diseases. Lyme Disease Society supported the HELP Committee version of the bill. Senators included Lyme Disease Society input on this bill version as well. Thanks to Senator Collins, the bill's sponsor, for her longtime support of Lyme and Tick-borne Disease patients. Thanks to Chairman Alexander, Ranking Member Senator Murray, Senator Casey from Pennsylvania, all the Senators on the Committee, and everyone who supported this Committee bill passing. The bill was renamed in memory of former Senator Kay Hagan, who recently passed away after a struggle with Tick-borne disease. Please note that this update is about the HELP Committee version of S 1657 'Tick Act' which passed. There is a different version of the bill introduced in the House.
HELP Committee information (outside site)
CDC Report on Vector-Borne Diseases and Case Estimates
The CDC issued a comprehensive report in 2018 on the concerning increase in cases of Vector-borne diseases in recent years, including Lyme and tick-borne diseases.
There are links to the report and also further updated, including in 2021, information from the CDC on expanded case estimates of Lyme disease below.
CDC Vector-Borne Disease Report (outside site)
CDC Estimates on Lyme Disease Cases (outside site)
Archive From Dec 2016: Victory! Congress Passes Federal 'Cures' Bill Including Tick-Borne Disease Legislation!
The US House and Senate have passed HR 34, the 21st Century Cures Act, including positive Lyme and tick-borne disease language! The bill will now head to President Obama, who has announced support, for his signature. The Cures bill includes language similar and taken from excellent federal Lyme and tick-borne legislation, sponsored by Rep. Chris Gibson, which had Lyme Society input. The language would establish a tick-borne disease working group with public members, including patients, non-profit organizations and clinicians.
Thanks very much to all who helped make this tremendous victory for patients happen! On the House side, Congrats and special thanks to Rep. Chris Gibson and his office for sponsoring the Lyme and tick-borne disease bill, and Chairman Upton and the bipartisan leadership on Energy and Commerce Committee. On the Senate side, Congrats and thanks to Senator Alexander, Chair, and the bipartisan leadership, of the HELP Committee, and special thanks to Senator Casey from Pennsylvania and his office for all of their support for patients and the fight against Lyme. Thanks to all members of the House and Senate who were involved and supportive of the Lyme and Cures legislation! Lyme Disease Society was involved and supported this legislative effort to fight Lyme and tick-borne diseases and help patients from the earlier stages through today's passage. Thanks to all of the groups and individuals in the Lyme disease community who supported this bill and worked on the effort.
Link to a pdf copy of HR 34, 21st Century Cures Act. Tick-borne disease section is Sec 2062. (outside site)
CDC - Lyme Disease Transmission
Link to information from the CDC on Lyme Disease
Transmission (outside site)
Disease Case Statistics
Link to the CDC Statistics on Lyme disease cases
Study - Lack of Evidence Behind Certain Treatment Guidelines
Link to Study Published in Archives of Internal Medicine
on Level of Evidence Behind
Infectious Disease Treatment Guidelines (outside site)
Link to Reuters article on Infectious Disease Treatment
Guidelines Study (outside site)
Link to the CDC's tick removal guide
Note: The above links are to external sites. The
and content at the linked addresses is outside the control of this site and
the Lyme Disease Society.
If you are interested in joining the Lyme Disease Society email list or being involved with our volunteer advocacy work, email LymeSociety@aol.com.
The Doylestown Lyme
Disease Support Group meets monthly in Bucks County, PA outside of Philadelphia.
*Please note: The support group's meetings are temporarily suspended due to the current public health situation.
Will update the community calendar when available*
Click for more details
About the Lyme Disease Society
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