NatCapLymeHome - NatCapLyme

LATEST NEWS

May 5, 2021

Fairfax County Virginia

Fairfax County Declares May as Lyme Disease Awareness Month

The National Capital Lyme Disease Association applauds Supervisor Pat Herrity for his leadership in Lyme disease prevention and awareness.

With summer fast approaching and people spending more time outdoors, it is important for everyone to learn about and take precautions against tick-borne diseases.

The Fairfax County Board of Supervisor’s has once again proclaimed May as Lyme Disease Awarenes Month in the County of Fairfax. The National Capital Lyme Disease Association (NatCapLyme) is grateful to Supervisor Pat Herrity and the Board of Supervisors for its continued commitment to raise awareness about and Lyme and tick-borne diseases.

February 27, 2021

McLean, VA

To Vaccinate or Not, That is the Question

According to a recent Associated Press – NORC poll, about one in three Americans say they would not, or probably would not, get the coronavirus vaccine. The question of whether to vaccinate against the COVID-19 virus has been a real dilemma for me as I have suffered from Lyme disease and its neurological complications for over 30 years. During that time, I have taken only one vaccination and unfortunately, it did result in neurological damage to my central nervous system, so I was very fearful of similar repercussions from the COVID vaccine. To make an informed decision as to whether to get a COVID vaccination, I researched and then found numerous studies and articles on the virus. I posted these articles on NatCapLyme’s Facebook given that I wanted to share this information with others as they soon will be faced with making the same decision.

November 15, 2020

VIRTUAL

NatCapLyme Resumes Support Meetings

For more than 20 years, NatCapLyme has been helping those struggling with Lyme and tick-borne diseases. When the pandemic began in the beginning of 2020, NatCapLyme immediately suspended in-person support group meetings for the safety of our participants. However, at that same time we made a commitment to find a way to continue our support group programs for all Lyme patients and their family members.

We are pleased to announce that we will again be resuming certain chapter support group meetings, however, this will be done virtually via ZOOM. We will post these virtual support group sessions on the NatCapLyme website calendar as these chapters open.

Here’s a link to our list of support groups: https://natcaplyme.org/support-groups/

By providing your email you agree to receive periodic emails from NatCapLyme.

VOICES OF THE COMMUNITY

Richard Horowitz, M.D.

Dr. Richard Horowitz, one of the country’s prominent Lyme and tick-borne disease specialists, recently made a presentation to the National Capital Lyme Disease Association. The title of his presentation was: Precision Medicine for Chronic Lyme and Multiple Systemic Infectious Disease Syndrome (MSIDS).

- Richard Horowitz, M.D. at Hudson Valley Healing Arts Center

NatCapLyme Interviews Rapper MC Bugg-Z

We hope you enjoyed watching the recently released Tick Check 1-2 rap video created by Andy Lima, also known as MC Bugg-Z, a biologist with the Fairfax County Virginia Health Department. Our very own Veronica Hohenstein interviews Andy as he chronicles the making of this video as well as explains the tremendous need for a video to reach young viewers on tick-borne disease prevention. Please click the camera icon to watch this informational, as well as fun, interview in which Andy closes with a spontaneous rap.

- Andy Lima (a.k.a. MC Bugg-Z), Tick and Mosquito Biologist at Fairfax County Health Department

Gregg P. Skall’s Presentation to the TBD Working Group

On December 11, 2017, Gregg P. Skall was asked to present the keynote address to HHS’s inaugural TBD Working Group in Washington, DC. Mr. Skall has been the pro bono counsel for the National Capital Lyme and Tick-Borne Disease Association. For these past 20 years, Mr. Skall has passionately advocated for the acknowledgement of Lyme and tick-borne diseases and for the advancement of treatment.

- Gregg P. Skall, General Counsel at NatCapLyme

Samuel M. Shor, M.D.

Dr. Samuel M. Shor, M.D. recently made a presentation to the National Capital Lyme Disease Association providing an update on the clinical research he is conducting with Ceres Nanosciences, a Northern Virginian based biotechnology company.

- Samuel M. Shor, M.D. at Internal Medicine of Northern Virginia

Neil Spector, M.D.

Dr. Neil Spector, M.D. recently presented to the National Capital Lyme and Tick-Borne Disease Association. The title of his talk was: Analogies between Lyme Borreliosis and Cancer Biology: Therapeutic Implications. His work focuses on the molecular and immunobiology of cancer, which could also lead to a paradigm shift in treatment to a new generation of targeted and immunotherapies to battle Lyme and its co-infections.

- Neil Spector, M.D., Sandra Coates Associate Professor of Medicine; Associate Professor of Pharmacology and Cancer Biology at Duke University School of Medicine

Ying Zhang, MD, PhD

Dr. Ying Zhang, M.D. recently presented to the membership of the National Capital Lyme Disease Association and the public-at-large at Johns Hopkins Sibley Memorial Hospital in Washington, DC. His informative presentation titled, “Drugs Targeting Borrelia Persisters: Implications for Improved Treatment of Persistent Lyme Disease,” was well received by the audience.

- Ying Zhang, MD, PhD, Professor, Department of Molecular Microbiology and Immunology at Johns Hopkins Bloomberg School of Public Health

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

View all

TOP ACCOMPLISHMENTS

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.

Offering support

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

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.

Uniting the Community

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.

Task force initiatives

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

IOM Tick-Borne Disease Workshop

Lyme treatment guidelines review

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.

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.

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.

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.

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.

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.

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, including our trademarked Tick Busters series for children. The collection includes nine brochures, a wallet-size tick identification card, an informational poster, a storybook for children, a library rack card, and a coloring book. 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.

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.

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.

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.

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. In December 2017, we were asked to present the keynote address to HHS’s inaugural Tick-Borne Disease Working Group in Washington, DC, and then in December of 2018 we were selected to participate in the first-ever Lyme Innovation Roundtable at HHS’s headquarters.

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.

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

KEEPING YOU INFORMED

10th Annual FinishLyme 5K & 1K Fun Run (Projected for May 1, 2022)

LATEST NEWS

Fairfax County Declares May as Lyme Disease Awareness Month

To Vaccinate or Not, That is the Question

NatCapLyme Resumes Support Meetings

Richard Horowitz, M.D.

NatCapLyme Interviews Rapper MC Bugg-Z

Gregg P. Skall’s Presentation to the TBD Working Group

Samuel M. Shor, M.D.

Neil Spector, M.D.

Ying Zhang, MD, PhD

Your Voice for Lyme and Tick-borne Diseases in the Nation’s Capital

Our patient advocacy

Offering support

Groundbreaking Lyme legislation

Uniting the Community

Educational materials

Task force initiatives

IOM Tick-Borne Disease Workshop

Lyme treatment guidelines review

Congressional luncheon briefing

Supporting grants through fundraising

Our patient advocacy

Offering support

Groundbreaking Lyme legislation

Uniting the Community

Educational materials

Task force initiatives

IOM Tick-Borne Disease Workshop

Lyme treatment guidelines review

Congressional luncheon briefing

Supporting grants through fundraising

Mailing Address

NEWS FLASH!

Tickula is back and on the loose!

and tick-associated diseases
In The Nation’s Capital