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Your Voice for Lyme

and tick-associated diseases
In The Nation’s Capital

Education is Your

Best Defense

A Helping Hand

For Those In Need

Striving Towards

Medical Breakthroughs

Uniting the Diverse

Voices of Lyme

Wave

KEEPING YOU INFORMED

Ying Zhang, MD PhD
Professor, Johns Hopkins School of Medicine

Ying Zhang, M.D. Presents to NatCapLyme

Johns Hopkins Sibley Memorial Hospital: November 13, 2016, 2:00 PM - 4:00 PM

Dr. Ying Zhang, a renowned professor at the Department of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health, will make a presentation titled, “Drugs Targeting Borrelia Persisters: Implications for Improved
Treatment of Persistent Lyme Disease.”

7th Annual Loudoun Lyme 5K/10K & 1K Fun Run

Brambleton Town Center: May 7, 2017

On May 7, 2017, the 7th Annual Loudoun Lyme 5K/10K/1K will drive awareness and raise money to help find a cure for Lyme disease – the number one tick-borne illness in the United States. The Loudoun Lyme 5K/10K will also feature a 1K fun run, as well as an information fair to educate the public about Lyme disease, its causes, symptoms and treatments.

LATEST NEWS

September 14, 2016

Vienna, VA

cut-a-thon-1-2016

2nd Annual Cut-A-Thon a Huge Success!

NatCapLyme would like to express its sincere appreciation to the Colour Bar Studio, located in Vienna, VA, for their 2nd Annual Cut-A-Thon event, which raised more than $9,000. The event was a great success and lots of fun for everyone. Proceeds from the event will go to benefit education, awareness, and research through the work of NatCapLyme.

Read more

June 13, 2016

McLean, VA

2016 5K Party check presentation

Loudoun Lyme Race Breaks Records

On May 15th, more than 1,500 runners and walkers from 15 states, the Virgin Islands and the District of Columbia participated in the Sixth Annual Loudoun Lyme 10K/5K/1K, making it the largest race for Lyme disease awareness and funding in America.

The race at Brambleton Town Center in Ashburn, Virginia netted close to $80,000, which will go to crucial Lyme disease research and prevention and educational programs.

Read more

May 13, 2016

Annapolis, MD

MD Gov Signs Official

Governor Signs First Maryland Lyme Disease Bill

Governor Larry Hogan today signed Maryland’s first Lyme disease bill into law. The Lyme Disease-Laboratory Test-Required Notice bill was passed unanimously in both the Maryland Senate and House of Delegates in April.

The law requires health care providers and medical laboratories that draw blood for a Lyme disease test to give patients a written statement explaining that current testing for Lyme disease can be problematic and that a negative result doesn’t necessarily mean you don’t have the disease.

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February 10, 2016

VA Senate Bill SB 671
VOICES OF THE COMMUNITY
Your Voice for Lyme and Tick-borne Diseases in the Nation’s Capital

Welcome to NatCapLyme’s new website, which was designed to bring updated information and new insights about Lyme and tick-borne diseases to our membership and the public at-large.

- Monte Skall, Executive Director at National Capital Lyme Disease Association

TOP ACCOMPLISHMENTS
1
Our patient advocacy

For almost 20 years, NatCapLyme has been a nationally known advocate for the recognition of tick-borne diseases and for the acknowledgment of the people who suffer from these diseases.

Read more
2
Offering support

Since its inception, NatCapLyme has provided support group meetings to Lyme sufferers and their families.

Read more
3
Groundbreaking Lyme legislation

NatCapLyme authored and petitioned for the passage of the Lyme Disease Testing Information Disclosure Act of 2013, and in 2016, the State of Maryland passed the Lyme Disease-Laboratory Test-Required Notice bill.

Read more
4
Uniting the Community

NatCapLyme participated in the creation of a newly formed organization called Partners Against Lyme and Tick Associated Diseases (PALtad). This organization was founded to advocate for and protect the rights of patients suffering from tick-borne diseases.

Read more
5
Educational materials

As one element of our public awareness campaign, NatCapLyme created a new series of highly acclaimed educational print materials on Lyme and tick-borne diseases.

Read more
6
Task force initiatives

NatCapLyme participated as a panel member on numerous Virginia and Maryland Task Forces, which focused on Lyme and tick-borne diseases.

Read more
7
IOM Tick-Borne Disease Workshop

NatCapLyme was a participant in the Institute of Medicine’s scientific workshop and represented the patient community on a summation panel presenting the patient’s perspective on current gaps in the science and research of tick-borne diseases.

Read more
8
Lyme treatment guidelines review

In anticipation of the IDSA’s Lyme treatment guideline review hearing at the Ronald Reagan Building in Washington D.C., NatCapLyme created an awareness campaign using lime green ribbons placed on two of the main thoroughfares entering Washington D.C.

Read more
9
Congressional luncheon briefing

NatCapLyme held a Congressional luncheon briefing for members of Congress and staff on Lyme and tick-borne diseases. All 535 House and Senate members were invited.

Read more
10
Supporting grants through fundraising

NatCapLyme engages in a variety of fundraising efforts to accomplish its mission and work on behalf of individuals with tick-borne illnesses.

Read more
001-Advocacy-Lyme-Banner-at-NY-Burrascano-Rally-2001
Our patient advocacy

For almost 20 years, NatCapLyme has been a nationally known advocate for the recognition of tick-borne diseases and for the acknowledgment of the people who suffer from these diseases. Our collective voices have been heard at rallies and protests, offices of elected officials and governmental agencies (including the CDC), schools, churches, health fairs, community events, support group meetings, and any location where there is an opportunity to advocate for those afflicted with tick-borne diseases.

002-Offering-Support-Meeting-Sibley-Hosp
Offering support

Since its inception, NatCapLyme has provided support group meetings to Lyme sufferers and their families. Meetings are held in Virginia, Maryland, North Carolina and the District of Columbia, and are an important resource for patients trying to regain their health. These meetings create vital networks for patients to learn the latest information on topics such as the current treatments for tick-borne illnesses, opinions on alternative treatment modalities, personal experience on healthcare providers, disability and insurance issues, and basic life skills for dealing with the daily challenges these illnesses present. Perhaps most importantly, these gatherings provide social connections where patients obtain validation and comfort that they are not alone in their suffering.

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Groundbreaking Lyme legislation

NatCapLyme authored and petitioned for the passage of the Lyme Disease Testing Information Disclosure Act of 2013. This legislation made Virginia the first state in the nation to require health care providers to give written disclosure to those tested for Lyme disease that current laboratory testing can produce false negatives, especially in the early stage of the disease. This grassroots effort proved that advocates working together can bring about significant change to benefit suffers of Lyme disease. Since the bill became law in Virginia, other states have similar legislation. Specifically, in 2016, the State of Maryland passed the Lyme Disease-Laboratory Test-Required Notice bill.

004-Uniting-PAL-Forum-29
Uniting the Community

NatCapLyme participated in the creation of a newly formed organization called Partners Against Lyme and Tick Associated Diseases (PALtad). This organization was founded to advocate for and protect the rights of patients suffering from tick-borne diseases. As an inclusive umbrella entity for many of the support and advocacy groups, both nationally and internationally, PALtad unites and empowers these groups so that jointly (partner-to-partner) they can fight to remove the many roadblocks preventing better testing, more accurate diagnostics, and improved treatment options for those dealing with such diseases. PALtad believes that in order to confront the status quo of misunderstanding and misdiagnosis that currently surrounds Lyme disease, advocacy groups need to establish a united front in the battle against tick-borne diseases.

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Educational materials

As one element of our public awareness campaign, NatCapLyme created a new series of highly acclaimed educational print materials on Lyme and tick-borne diseases. The collection includes seven brochures, a wallet-size tick identification card, and an informational poster. One brochure is in Spanish and is intended to reach individuals, such as landscapers, whose employment places them at a higher risk for encounters with ticks. All materials are distributed free of charge to the public and are being circulated by health departments, schools, civic associations, and government agencies across the country. On average, more than 250,000 pieces of literature are distributed each year.

006-Task-Force-158-VA-Lyme-Gov-Cmtee-11-30-10-012
Task force initiatives

NatCapLyme participated as a panel member on numerous Virginia and Maryland Task Forces, which focused on Lyme and tick-borne diseases. One of the Virginia task forces held public hearings to gather important information about the accuracy of diagnostic tools and the efficacy of treatment. During these public forums, scores of residents testified about the detrimental impacts of Lyme disease and the problems of finding prompt diagnosis and treatment. NatCapLyme also partnered with Maryland’s Montgomery County Health Department on a Lyme and tick-borne disease campaign.

007-Lyme-Awareness-IOM-Cover
IOM Tick-Borne Disease Workshop

NatCapLyme was a participant in the Institute of Medicine’s scientific workshop and represented the patient community on a summation panel presenting the patient’s perspective on current gaps in the science and research of tick-borne diseases. We were also commissioned by the National Academy of Sciences to author a paper entitled, The Human Dimension of Lyme and Other Tick-Borne Diseases: the Patient Perspective. This paper was used as a supporting document for the Academy’s scientific workshop to assess the state of the science of Lyme and other tick-borne diseases.

008-Lyme-Treatmemt-Guideline-Hearing-2009
Lyme treatment guidelines review

In anticipation of the IDSA’s Lyme treatment guideline review hearing at the Ronald Reagan Building in Washington D.C., NatCapLyme created an awareness campaign using lime green ribbons placed on two of the main thoroughfares entering Washington D.C. Lime green bows and ribbons were tied around trees and lamp posts, starting at the National Institutes of Health and ending at Freedom Plaza in front of the Ronald Reagan Building where the hearing took place. While the meeting was not open to the public, NatCapLyme arranged for patients to watch the proceedings by providing a media room at a nearby hotel.

009-Congressional-Lyme-Briefing-072
Congressional luncheon briefing

NatCapLyme held a Congressional luncheon briefing for members of Congress and staff on Lyme and tick-borne diseases. All 535 House and Senate members were invited. The goal of the luncheon was to convince Congress of the depth of human suffering and loss of productivity caused by tick-borne diseases. We wanted Congress to know the controversy surrounding diagnosis, treatment, and that the existence of chronic Lyme disease requires their attention and immediate action. We believe investigative Congressional hearings on the growing epidemic of Lyme and other tick-borne diseases are critical.

010-Lyme-Challenge-Loudoun-5K-2015
Supporting grants through fundraising

NatCapLyme engages in a variety of fundraising efforts to accomplish its mission and work on behalf of individuals with tick-borne illnesses. The funds we raise are distributed to support research, education, legislative and advocacy activities. We give precedent to those projects, researchers and advocacy groups whose work will help advance the goal of obtaining a cure for Lyme and tick-borne diseases.

CONTACT US
Please fill out the form below for general inquiries.
Mailing Address

National Capital Lyme Disease Association
P.O. Box 8211
McLean, VA 22106-8211