Our Role & Impact

Our Role & Impact

About NatCapLyme

The National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) is an all-volunteer nonprofit 501(c)(3) organization dedicated to improving the lives of those suffering from Lyme and other tick-borne illnesses. Founded in 2001, our organization has chapters throughout Virginia, Maryland, the District of Columbia and North Carolina. Our members, including our board of directors, have either experienced the disease personally or have loved ones suffering from a tick-borne illness. We promote prevention through education and awareness, as well as encourage doctor training and research for timely diagnosis and treatment of these illnesses.

Our advocacy and legislative efforts support our mission by advancing the pursuit of a cure for Lyme and other tick-borne diseases. Until that cure is found and made available to all who suffer, we will work tirelessly to bring public awareness to this growing epidemic that afflicts more than 300,000 Americans each year (CDC, 2013). That’s why we were so excited we were able to contribute to the passage of the Lyme Disease Testing Information Disclosure Act of 2013. NatCapLyme played a significant role in the passage of this groundbreaking bill, which makes Virginia the first state in the nation to inform patients of the limitations of current Lyme disease tests.

We provide education and information about tick-borne diseases to a variety of communities, including federal and state government employees, the private sector, and all levels of student groups, from grade schools to universities.

Additionally, we offer emotional support to Lyme patients and their families through our monthly support group meetings. Our flagship Washington, DC chapter holds its monthly support group meeting from 2 p.m. to 4 p.m. on the first Sunday of the month, with the exception of January, July and September. These meetings are held at Sibley Memorial Hospital, 5215 Loughboro Road, N.W., Washington, DC, 20016, New Medical Building, Room 2. You can find the meeting schedules for our other chapters here.

To get involved, ask a question, or receive additional information, please contact us at natcaplyme@natcaplyme.org or call 703-821-8833.

Mission Statement

NatCapLyme strives to improve the quality of life for people suffering from Lyme and other tick-borne diseases by offering support and disseminating information to educate and empower patients, families, healthcare workers, and the community at large.

We have three main strategic objectives to accomplish our mission:

1. Build Support

We create networks for sharing our personal trials and experiences through our monthly support group meetings. Through medical conferences, educational seminars and public events, we collaborate and partner with other organizations and government agencies that are focused on treating and eliminating tick-borne illness.

2. Increase Awareness

We educate communities through public service programs and the distribution of print and digital materials. We heighten public awareness about tick-borne diseases by hosting noted healthcare professionals’ presentations. Using social media, television, radio and newspaper, we draw media attention to tick-borne illnesses, raising awareness nationwide.

3. Find a Cure

We build support for tick-borne disease research by educating local, state, federal and international medical and political influencers, in addition to funding Lyme disease research efforts. We work on both state and federal legislation to address Lyme and tick-borne disease issues.

Board Members

The NatCapLyme Board of Directors meets monthly to discuss and plan all association activities and review latest developments in medical research pertaining to Lyme and associated tick-borne diseases.

Among the board members of NatCapLyme are accomplished individuals from all walks of life, and of myriad backgrounds and talents. The board includes: medical professionals, attorneys, contractors, lobbyists, current and former government officials, artists, librarians, lobbyists, scientists, students, teachers, neighbors, family members, and coworkers. The diversity of the board helps to maintain a broad and even-handed perspective in our organization.

2016 Board of Directors

  • Kathy Boileau
  • Nancy Brooks
  • Barbara Cohen
  • Maureen Crystal
  • Ellen Douty
  • Louise Filkins
  • Myra Holt
  • Janet Jensen
  • Joe LeBlanc
  • John Lee McLean
  • George Phillips
  • Peter Rosenfeld
  • Mauricia Shanks
  • Monte Skall
  • Vernon Todd
  • Dawn Wilson
  • Executive Director: Monte Skall
  • Recording Secretary: Janet Jensen
  • Legal Counsel: Gregg Skall
  • Legislative Counsel: Susan Green
  • Communications Advisor: Louise Filkins
  • Marketing & Development Advisor: Jaclyn O’Brien
  • Parliamentarian: Don Boileau
  • Educational Consultant: Dr. Nancy Fox

Strategic Partnerships

NatCapLyme collaborates with diverse groups across the nation to advocate for more accurate diagnostics and improved treatment options. We believe that diversity, teamwork, and determination will drive the creation of innovative solutions and ideas as we unite behind a shared sense of purpose. Every group’s perspective is respected and valued, as diversity in knowledge, experience and opinion enlightens and strengthens our own organization’s work and the greater cause.

Among many of our past partners are U.S. Representatives Barbara Comstock, Jerry Connolly, Rob Wittman, Frank Wolf; George Mason University; Institute of Medicine; U.S. Centers for Disease Control; Montgomery County (MD) Health Department; Fairfax County (VA) Health Department along with Supervisor Pat Herrity; the Loudoun County (VA) Health Department along with Supervisor Geary Higgins; and Partners Against Lyme and Tick Associated Diseases.

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Position Statements

NatCapLyme focuses our efforts on helping people with tick-borne diseases through awareness, education, support, advocacy, and research. After careful deliberation, we issue formal position or policy statements on issues that are of critical importance to our community and our association’s mission. We invite you to read through our past position statements:

Position-Statements

Statement on CDC Guidelines Posting Policy

On behalf of the National Capital Lyme Disease Association this statement is published to express our serious concern over the CDC continued posting and endorsement of the IDSA treatment guidelines and refusal to post the ILADS Guidelines.

Letter to the Honorable Bob McDonnell

NatCapLyme Letters to Governor Bob McDonnell addressing HB1933, the Lyme Disease Testing Information Disclosure Act, requesting that he sign the bill into law and reject the Medical Society of Virginia’s attempt to Veto this lifesaving legislation.

NatCapLyme Presentation at IOM Workshop: The Patient Perspective

Addressing the Gaps in Scientific Research on Lyme and Other Tick-Borne Diseases - A Patient Perspective.

Chronic Lyme Disease and Associated Co-infection Research, Presentation to the Institute of Medicine of the National Academies By The National Capital Lyme & Tick-Borne Disease Association

Presentation to the Institute of Medicine of the National Academies
By The National Capital Lyme & Tick-Borne Disease Association

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Legislative Activities

Founded in and serving the Washington, DC area since 2001, NatCapLyme educates government officials and healthcare industry leaders about Lyme and tick-borne diseases on behalf of individuals and families of those afflicted with such diseases. We actively engage with all sides of the Lyme and tick-borne disease issue to encourage measurable progress. NatCapLyme is an all-volunteer organization, but we have an appointed legal and legislative counsel, as well as individual board members, who bring political and legal experience to the table. Our legislative activities are ongoing, always focused on improving the lives of tick-borne disease sufferers.

Legislative-activities

We’re fighting on many fronts. We invite you to see what we’re doing on a state and federal level:

Governor Signs First Maryland Lyme Disease Bill

Governor Larry Hogan signed Maryland’s first Lyme disease bill into law on May 13, 2016. The Lyme Disease-Laboratory Test-Required Notice bill was passed unanimously in both the Maryland Senate and House of Delegates in April.

SB 671 and HB 962 the First Step Towards Consensus Building

This was an exciting year for the Lyme community in the Virginia General Assembly, with two patient-driven Lyme-related bills being introduced.

Virginia Senate Passes Landmark Lyme Disease Bill

The National Capital Lyme Disease Association (NatCapLyme) today announced that the Virginia Senate passed landmark legislation relating to a patients right to treatment under guidelines listed in the National Guidelines Clearinghouse (the “NGC”).

Governor McDonnell Ceremonially Signs the Lyme Disease Testing Information Disclosure Act of 2013

Surrounded by legislators and community leaders, Governor Bob McDonnell ceremonially signed today HB1933, the Lyme Disease Testing Information Disclosure Act of 2013. The legislation makes Virginia the first state in the nation to require health care providers to notify those tested for Lyme disease that current laboratory testing can produce false negatives, especially in the early stage of the disease.

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Voices of the Community

What will make a meaningful change in the lives of those suffering from tick-borne illnesses, given how deeply divided the medical, scientific, governmental, and political groups are with respect to their beliefs, approaches, and treatment of these diseases? While many of us dream of a cure, what transformational event or circumstance will lead to these elusive medical breakthroughs?

We believe that the genesis for change begins simply with conversations that are respectful, constructive, collaborative, and solution-focused among the broad spectrum of players making up the Lyme and tick-borne disease community.

To do our part to stimulate such conversations, this blog is intended to provide our readership with interviews from the leading physicians, researchers, politicians, and even patients involved in these Lyme related issues. Our purpose here is to collect the visions and insights of these individuals with the belief that such a resource may engender innovation, new ideas, and fresh approaches to the diagnosis and treatment of Lyme and other tick-borne diseases. Beyond impacting the present debate, these interviews may serve as a repository for understanding the historical evolution and significance of these diseases and their treatment.

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