NatCapLyme

LATEST NEWS

November 9, 2019

Herndon, Virginia

Tick Busters Children’s Educational Literature Series Released

In our continuing efforts to teach children, parents, educators and school nurses about the dangers of tick bites and tick-borne diseases, NatCapLyme debuted its new Tick Busters series of educational literature on Lyme and tick-borne disease prevention. The series consists of a storybook, a membership/tick ID card, a brochure, a coloring/activity book and a rack card. Since NatCapLyme feels that education is your best defense to prevent Lyme and tick-borne diseases, the series heavily focuses on teaching children how to prevent being bit by a tick.

NatCapLyme makes this literature available free of charge to families, teachers, school nurses, your child’s classroom, or any other educational institution interested in spreading the word about tick bite prevention. To request material, please contact us at 703-821-8833 or natcaplyme@natcaplyme.org.
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October 31, 2019

Leesburg, Virginia

Tickula Dazzles Kids at Halloween Monster Mash

Boys and ghouls, and their families, had a fun time trick-or-treating at the annual Halloween Monster Mash in Leesburg, Virginia. At the NatCapLyme information booth, participants received a special Halloween treat, a storybook about a devious blood sucking tick named Tickula. Little did they know that they were being tricked by this book into learning how to protect themselves from getting bit by a tick that could make them sick.

NatCapLyme strongly believes that education is your best defense against getting a tick-borne disease.

If interested in receiving NatCapLyme’s new TICK BUSTER series please contact us at 703-821-8833.

October 22, 2019

Washington, DC

NatCapLyme Participates in Congressional Lyme Briefing Organized by the Center for Lyme Action

On October 22, representatives from the National Capital Lyme Disease Association (NatCapLyme) along with Lyme advocates from across the country were invited to participate in a briefing sponsored by the Center for Lyme Action on Capitol Hill.

According to Monte Skall, executive director of NatCapLyme, ” It was truly inspiring to see so many diverse Lyme advocacy groups assembled for the sole purpose of spotlighting the tremendous need to further the development of diagnostics and drugs to alleviate the suffering caused by a tick-borne illness.”

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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. 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.

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.

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

Annual 2020 Conference of the Virginia Council of Nurse Practitioners

LATEST NEWS

Tick Busters Children’s Educational Literature Series Released

Tickula Dazzles Kids at Halloween Monster Mash

NatCapLyme Participates in Congressional Lyme Briefing Organized by the Center for Lyme Action

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

and tick-associated diseases
In The Nation’s Capital