Click here for pdf - Lyme Disease Association

Lyme Disease Association, Inc. [501(c)(3)]* ALL VOLUNTEER public charity registered in 33 states
Over $4.5 million raised for LDA’s Lyme disease programs (less than 4% admin costs)
Part of the Combined Federal Campaign 2005-2009 (part of federally approved national charity list)
Partner with Environmental Protection Agency PESP Program
Working Group with EPA, CDC on Preventing Lyme in Children
Collaborator with NJ Medical School under EPA grant (TickLES video & interactive video game for 4th-8th grades)
Partnership with Brookfield CT Rotary in new business card-sized tick ID card (2009)
Actor Mary McDonnell − national spokesperson
Research Grants (1992 to 2009) 32 Researchers 20 Institutions (lists on back)
69 Grants Awarded in 11 States
Accomplished
Columbia University Lyme & Tick-Borne Diseases Research Center Opened
LDA funded grant data used by Fallon to apply for $4.7M NIH grant for treatment study
Genome mapping of other strains of Borrelia
14 Publications in scientific peer review
6 Presented at Conferences
Research collaboration & introduction of neurotropic strain of Bb into monkey studies
Patient Data Base Development for treating physicians
Collaborating with other groups
10 Fully Accredited Scientific Conferences/Videos for all
CME Partners:
Westchester Academy of Medicine
Jersey Shore Medical Center
Columbia University College of Physicians & Surgeons
Educations Grants Stats (2003 to 2009)
39 grants, 13 states + UK (CA, FL, KS, LA, MO, MD, NJ, NY, NC,
OR, PA, TX) 16 groups or institutions
Purposes: Publications, Curriculum project, Meetings, Websites,
Distribution of materials to School Nurses, Community survey &
education, Projects in Schools, Sponsor physicians for CME medical
conferences & Support CME medical conferences, Symposia, Fully
accredited 2 day medical conference [Bard])
LymeAid 4Kids grants (for families with no insurance for LD)
Over $144,000 given to 145 children in 25 states & CAN
Federal Education Activities
Had expert meeting with FDA on vaccine (2002)
Testified on vaccine at FDA Advisory Committee Hearing (2002)
Had letter accepted in court on vaccine settlement
US Senate HELP Committee Briefing
US House of Representatives Lyme Disease Caucus Briefing
US House of Representatives Briefing
US Military Officials Briefing
US Army CHPPM meetings
US Health & Human Services Briefing
Centers for Disease Control & Prevention Meetings (Ft. Collins CO)
Centers for Disease Control & Prevention Director Meeting (DC)
National Institutes of Health Lyme Program Briefing
Congressional Forum on Lyme Speaker (RI) 2002
Congressional Forum on Lyme Speaker (PA) 1999
Lyme in the South Conference (CDC a sponsor, in Atlanta 2009)
CSTE meeting (spoke against change in reporting criteria 2007)
Other Federal Activities
Lyme bills in Congress 10 years (input into language)
Appropriations language (input and House passage) (2009)
Department of Defense Appropriations 1994, 1999 (input/ passage)
GAO Investigation
Press Conferences with Senator Schumer, Dodd, Santorum (former);
Congressmen Hall, C. Smith
Precipitated many Congressional/Senate letters to Departments &
Agencies on Lyme issues
State Education Activities
RI Invited to bill signing by Governor (spoke ‘02)
NH Invited to Lyme Awareness Procl. Signing by Gov. (Spoke ’05)
CT Invited to Bill Signing Connecticut (Photo op with Gov. ‘09)
CT Attorney General Action against IDSA (complainant ‘06)
LDAnet Umbrella - 35 allied organizations nationwide (’09)
Testimonies/Invited by officials for briefings
Massachusetts, New York, Connecticut, Maryland, New Jersey,
Pennsylvania, Minnesota, N. Hampshire, Rhode Island, Florida
Other State Activities
NJ Mandatory teacher Lyme in-service & State-Adopted Lyme
Curriculum law (directly w. sponsor ‘95, helped write curriculum)
NJ Governor’s Lyme Disease Advisory Council law (directly w.
sponsor ‘93) (LDA(NJ) Pres. Also served as Chair)
RI Mandatory insurance law (worked directly sponsor ’03, 04)
RI Doctor Protection law (worked directly with sponsor ‘02)
NY OPMC Memo on Dr. Protection (worked directly w. leg.’05)
CT Physician Protection law (worked directly w. sponsor ‘09)
MN Lyme Protection Bill (currently working w. sponsor)
MA Lyme Protection Bill (currently working w. sponsor)
Brochures, Books, Other Publications by LDA
LymeR Primer
ABCs of Lyme Disease
Tickmarks
Tick Cards (new)
How A Tick Can Make You Sick (Power Pt. for Schools, free online)
Lyme Disease Update: Science Policy & Law
Lyme Disease Is No Fun: Let’s Get Well!
Conflicts of Interest in Lyme Disease: Laboratory Testing,
Vaccination, and Treatment Guidelines
Literati with Lyme
Authors Amy Tan, Rebecca Wells, Meg Cabot, E. Jean Carroll,
Jordan Fisher-Smith, & Rebecca Wells; Editor Jennifer Weis
Website (new website coming soon)/ Toll Free Info Line
16-25 million hits annually/ For those without computer access
Doctor Referral online
2006-2009 28,000+ used the online referral [3 docs each time]
(others by phone before automated system)
Principle Investigator-Grants
Alan MacDonald, MD (equipment)
Andrea Gaito, MD
Benjamin Luft, MD
Brian Fallon, MD, MPH, MEd
Columbia Lyme Disease Research Center
Daniel Cameron, MD, MPH
David E. Fulford, PhD & Cynthia E. Rebar, PhD
David Younger, MD
Dolores E. Hill, PhD
Elizabeth Raveche, MD
Elyes Zhioua, PhD
Gregory Bach, DO
H. Ralph Schumacher, MD
Joseph Burrascano, Jr., MD
Joshua Zimmerberg, MD, PhD
Kerry Clark, MPH, PhD
Manfred Bayer, MD
Maria M. Picken, MD, PhD
Mario Phillip, MD
Mark E. McCaulley, MD
Martin Fried, MD
Marylynn Barkley, MD, PhD
Nikhat Parveen, PhD (equipment)
Paul Duray, MD
Richard Horowitz, MD
Ritchie Schoemaker, MD
Rockefeller University
Sam Donta, MD
Steven Burke, MD
Steven Phillips, MD
Steven Schutzer, MD
Zhaid B.M. Niazi, MD
LDA Research Published in Peer Review
2009 Archives General Psychiatry
2008 Emerging Infectious Diseases
2006 Infection & Immunity
2006 Journal International Neuropsychological Soc.
2005 Journal of Clinical Microbiology
2004 Proceedings of National Academy of Science
2002 Journal of Psychiatry & Clinical Neuroscience
2002 JSTBD
2001 Journal of Psychiatry & Clinical Neuroscience
1999 Neurology
1999 Journal of American Medical Association (JAMA)
1999 JSTBD
1999 Infection
1998 Psychiatric Clinics of North America
Universities/Facilities for Research & Education Grants
Boston Medical Center
Brigham & Woman’s
Columbia University/NYSPI
Edinboro University of Pennsylvania
Fox Chase Cancer Center, Philadelphia, PA
Hackettstown Regional Medical Center
Jersey Shore Medical Center (Meridian)
Loyola University Medical Center
National Institutes of Health (NIH)/
National Aeronautics & Space Administration (NASA)
New York Medical College
New York University
Rockefeller University
Science Center University City (Philadelphia)
Tulane Regional Primate Center.
U.S. Department of Agriculture (UDSA)
University of California, Davis
University of Louisiana at Monroe
University of Medicine and Dentistry New Jersey
University of North Florida
University of Pennsylvania
University of Pittsburg School of Nursing
University of Rhode Island
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
732 938 7215 (Fax)
888 366 6611 (Toll free info line)
[email protected]
www.LymeDiseaseAssociation.org
* All contributions to the Lyme Disease Association are deductible to the extent allowed by law.
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