The 10th Annual FinishLyme 5K/1K Run 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 FinishLyme 5K 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.
May 26, 2020
Maryland Governor Larry Hogan has proclaimed May as Tick-Borne Disease Awareness Month
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.
In the United States, tick-borne disease accounts for the majority of vector-borne infections reported each year. In 2018, nearly 1,400 cases of Lyme disease were reported in the state of Maryland. The Maryland Department of Health (MDH) recognizes the public health impact of tick-borne disease and encourages Maryland residents to learn how to protect themselves, their family, and their pets from tick bites.
The National Capital Lyme Disease Association (NatCapLyme) is grateful to Governor Hogan and the Maryland Department of Health and Mental Hygiene along with local health departments, healthcare providers, veterinarians, community organizations and advocacy groups for their continued commitment to raise awareness about Lyme and tick-borne diseases.Read more
April 27, 2020
Susan R. Green, Esq, who serves as legislative counsel to the National Capital Lyme Disease Association, provided public comments at the 13th meeting (held via a webcast) of the Tick-Borne Disease Working Group (TBDWG) on Monday, April 27, 2020.
Ms. Green’s comments were formulated based on the Right to Try bill signed into legislation on May 30, 2018. Specifically, she draws attention to access to care and the removal of the impediment that patients face in obtaining the Right to Try medications and protocols that may be life-saving or life altering for the treatment of Lyme and tick-borne diseases.
Ms. Green stated to the TBWDG, “I ask this committee to unfetter the hands of these doctors who are on the front lines of battling Lyme and tick-borne diseases trying to find a treatment to help these very sick and abandoned patients.”Read more
January 29, 2020
Gregg P. Skall, Esq, who serves as legal counsel to the National Capital Lyme Disease Association, provided public comments at the 11th meeting of the Tick-Borne Disease Working Group (TBDWG) on Tuesday, January 28, 2020 in Washington, DC. Mr. Skall’s presentation focused the December 2019 signing of the Kay Hagan Tick Act. Mr. Skall asked the TBWDG, “Should this funding be appropriated, the important question here is “Who will get the money? Especially, since the legislative funding language was changed from “tick-borne” to “vector-borne” disease during the legislative process.” Mr. Skall further asked, “How much will be siphoned away from tick-borne disease to less common but more publicized vector diseases associated with mosquitoes?” Mr. Skall also stated that NatCapLyme believes that future research funding should include patients with the PERSISTENT form of the disease given that these patients are at the heart of the Lyme controversy!Read more
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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
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
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
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
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
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
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
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
Since its inception, NatCapLyme has provided support group meetings to Lyme sufferers and their families.Read more
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
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
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
NatCapLyme participated as a panel member on numerous Virginia and Maryland Task Forces, which focused on Lyme and tick-borne diseases.Read more
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
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
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
NatCapLyme engages in a variety of fundraising efforts to accomplish its mission and work on behalf of individuals with tick-borne illnesses.Read more
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
NatCapLyme has suspended in-person support group meetings resulting from the global Coronavirus pandemic for the time being.
We will resume meetings once it is safe to do so for our community.