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- New
Lyme Awareness Bracelets Available
here.
- Get
Your Tick Removal Kits here.
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- Don't
forget to Check the Updates
Section.
- All
issues of the Journal of Spirochetal and Tick Borne Diseases are now available
at the Journal Site.
- New
to the section is listings of upcoming Symposiums
and Seminars
The Lyme Disease
Foundation (LDF) is the premier nonprofit dedicated to finding
solutions for tick-borne disorders. Realizing the ability to
find solutions involves a multi-discipline effort, the LDF includes
the four cornerstones of progress (businesses, patients, government,
and the medical community) to work together to find solutions
to tick-borne disorders. The LDF is the only tick-related charity
to meet federal standards to qualify as national nonprofit and
has strong ties to the international scientific community. The
LDF has an active media outreach, education (medical and public)
and research programs. The headquarters is staffed by a team
of full-time professionals, has a modest library of articles,
is highly computerized, and has a database of about 100,000 tick-borne
disease aware households. 87% of every donation goes directly
to programs, with 13% supporting those programs. The LDF was
cofounded in 1988 by Karen Vanderhoof-Forschner, MBA, CPCU, CLU
and Thomas E. Forschner, MBA, CPA at the request of researchers
seeking a scientific forum where they could present a wide range
of research results, conduct vigorous debate, nurture friendships,
and foster new collaborations. They believed Lyme disease was
serious and pervasive enough to need its own staffed nonprofit.
This diverse and dedicated team of board members trailblazed
into a world unaware of this disease, raising awareness from
0% to 88% within 2 years. The Forschner's were seeking help for
Jamie their son, who was born with and suffered from Lyme disease.
Although Jamie died in 1991 during a relapse, this team continues
on in the hope that others will be spared from suffering similar
anguish. Tick-borne disorders include: babesiosis, cat scratch
disease (Bartonella), ehrlichiosis, Colorado tick fever, Lyme
disease, Masters' disease, Query fever (potential biowarfare
agent), Powassan encephalitis, relapsing fever (potential biowarfare
agent), Rocky Mountain spotted fever, tick paralysis, & tularemia
(potential biowarfare agent). (Summary of the LDF's Accomplishments)
BOARD OF DIRECTORS (Board
of Directors
of the LDF Scientific
Advisors
(Current and Past) to the LDF)The distinguished Board includes
the discoverer of the Lyme bacterium, a retired Congressman,
business executives, physicians, researchers, patients, and public
health officials. The LDF board meets quarterly to review and
provide input into all LDF programs and activities.
TASK FORCES
& LD COMMUNITY CAUCUS
The New Jersey
and Midwest Task Forces conduct public and professional education
programs, have input into public policy programs, and partner
with public health officials. Each leader is active in their
state's government tick-borne disease programs. Roberta Bethencourt,
MSW, the NJ leader, is a social worker and is on the NJ Governor's
LD Task Force. Renee Thaler, the Midwest leader, is a political
consultant, works in partnership with the Illinois Department
of Health, and has been successful in enacting LD legislation
in Illinois. In 2002 the LD Community Caucus was established
with these members, along with the Lyme Disease Society and Michigan
Lyme Disease Association. This new group of people work together
to present one unified voice to government officials on tick-borne
issues.
AWARDS
The LDF has
won awards for its educational activities as well as its Television
Specials (Lifetime TV Network, Public Broadcasting System) as
well as its website. (click here to see our awards)
- SCIENTIFIC
EDUCATION
Conferences
- Medically-Accredited Twenty scientific conferences (17 International
Conferences) have been conducted, as well as a special satellite
program that was transmitted throughout the Western Hemisphere.
These global programs unite physicians and researchers in various
disciplines to discuss the latest research and clinical developments.
This education results in more effective medical care and fosters
the forging of new collaborations. Web postings of conference
summaries have been read by about 50,000 users (60% healthcare
professionals) and have awarded continuing medical education
credits to over 1,000 additional physicians. (click here for Scientific
Education)
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- PUBLICATIONS
- Journal of Spirochetal and Tick-Borne Diseases
(JSTD) is the first peer-reviewed
scientific publication dedicated to tick-borne and spirochetal
disorders. The JSTD is sent to medical libraries and health departments
across the county.
Journal
of Clinical Infectious Diseases chronic LD supplement (Infectious Disease
Society of America) was supported by the LDF and featured presentations
from the LDF's International Conference.
RESEARCH
Research
programs have funded over $500,000 in research, resulting in
over 30 scientific publications, facilitating two patents and
one technology transfer (an improved test) from the federal government
to private industry. James Miller, PhD oversees the two-tier
research program in order to ensure the credibility of the proposed
research and the progress of the grants through publication.
(click
here for the Research section)
- PUBLIC POLICY
The LDF has
an active Public Policy program that educates legislators and
government officials about the status of tick-borne disorders
research, issues facing healthcare providers, and the plight
of patients.
The LDF:
- Testifies
at Federal and State Hearings
Drafts and Supports Federal & State Legislation
Conducts Congressional Briefings educating members.
Conducts Lyme Disease Awareness Month Congressional Press Conferences
Organizes Lyme Disease Awareness Month March on Washington rallies
to "Wake-up Washington!"
Drafts and Supports Federal & State Resolutions
Conducts the National Children's Lyme Disease Poster Campaign
with selected posters displayed during Lyme Disease Awareness
Month, reminding elected officials that tick-borne disorders
affect us all.
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- MEDIA AWARENESS
The LDF is
frequently solicited for interviews on a wide variety of tick-borne
issues - from scientific advancements, to legislative opinions,
and disease descriptions. Media programs include press releases,
B-roll, scientific updates, interview referrals, and photos.
The LDF has TV, radio, and print public services announcements
that have aired across the country. Hosts are parents, researchers,
puppets, Emilio Delgado "Luis" of Sesame Street, as
well as rock-legend Billy Joel.
Appearances include:
- 20/20 - Nightline
- Oprah - MTV's Real World - Univision - TV Tokyo - Today Show
- ABC/NBC/CBS News - CNN - Geraldo - TIME - Modern Maturity -
Newsweek - NY Times - Essense - Wall Street Journal - Parents
- RN Magazine - U.S. Pharmacist - Consumer Reports - Outdoor
Life - Golf Digest - Washington Post - Ebony
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PUBLIC &
COMMUNITY EDUCATION
The LDF has
a very active education program consisting of over one hundred
programs per year, from 20-mintute "lunch and learns",
to 3-hour evening community presentations, to multi-day health
fairs. The 1999 March-to-Victory education presentations visited
over 20 cities across the US, educating thousands of people and
medical professionals about tick-borne disorders. The extensive
scientific, public, school, and workplace educational materials
include tabletop displays, brochures, posters, videos, wallet
cards, scientific packets, and much more. The LDF distributes
thousands of brochures to schools, libraries, health departments,
parks, scouts, and other groups every year. The LDF's quarterly
LymeLight newsletter keeps people informed about the latest
events and news. (click
here for Community Education)
WEBSITE
The LDF website
receives about 300,000 hits a month from nearly 100 countries
and contains a wealth of information & photos about ticks,
diseases they spread, and prevention techniques. This site is
one of the top websites recommended by the Hartford Courant and
is a referral site for numerous government agencies, such as
the National Institutes of Health, Centers for Disease Control
& Prevention, as well as the Food & Drug Administration.
It is Medinex and Study-Web certified as a credible source of
healthcare information.
24-HOUR HOTLINE
This 24-hour
Hotline (800-886-LYME(5963)), in operation since 1993, responds
to over 80,000 inquiries each year from across the country and
contains numerous information options, including proper tick
removal, disease information, prevention techniques, physician
referrals,
and even information to help pet owners.
VOLUNTEERS
A wide variety
of people volunteer their time and expertise to the LDF, including
conference speakers, scientific advisors, JSTD reviewers, self-help
group leaders, community educators, and a webmaster. The LDF
assists registered support/self-help groups across the country
with consultation and training programs. Patients and their families
are referred to groups in the United States, Canada, Europe,
and Australia.
- FUNDRAISING
The LDF has
experience with a full range of fundraising programs including:
donation of equipment and services (cars for auction, furniture,
web expertise, photography); conducting events (telethons, walk-athons,
concerts, auctions, golf tournaments, singles nights, rummage
sales, bake sales); sale of LDF-developed material; sales at
other companies (e.g. Amazon.com, SNET); donations in honor or
memory of individuals; donation cannisters; government grant
programs; workplace donations; partnerships with corporations;
and direct mailings to the LDF's 100,000+ name database.
ALLIANCE PARTNERS
The LDF Alliance
Education and Research Partners includes Fortune 500 companies
to small proprietors & health agencies. Participants include:
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Ace Hardware |
BBI Clinical
Laboratories |
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Ct. Agricultural
Experiment Station |
CVS Pharmacies |
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Family
Circle Magazine |
FrontierNet |
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Glaxo Pharmaceutical |
GreenLight
Sales Company |
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Home Depot |
Igenex
Laboratory |
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Illinois
Department of Health |
L'Oreal |
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Medical
Diagnostic Laboratories |
Payless*Cashways |
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Rotary |
SmithKline
Beecham |
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Speciality
Labs |
Texas Department
of Health |
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Wal*Mart |
Wampole
Laboratories |
- Examples:
In partnership with the Connecticut Rotary and the local health
department, the LDF mailed 80,000 LDF brochures and tick-cards
to residents of Greenwich, CT. Working with CVS Pharmacies the
LDF distributed thousands of brochures and tick-cards throughout
Rhode Island and Massachusetts. During different years L'Oreal
and Hartz Mountain funded national TV and print educational ads.
Greenlight distributed brochures throughout the country.
- NETWORKING
& REFERRALS
Every year
we help tens of thousands of people looking for physicians or
support groups, as well as clinicians or scientists looking for
research collaborators or funding.
WORKPLACE
CAMPAIGNS
Combined Federal Campaign - LDF is the only tick-borne charity
that meets federal standards to be considered a national organization.
Community Health Charities - LDF is a full member of the Community
Health Charities since '97 and an associate member since '91.
United Way - LDF participates in United Way programs around the
country.
Some
of the programs include:
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AL - United
Way of Central Alabama |
CA - United
Way of the Bay Area |
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CA - United
Way of San Diego |
CT - Valley
United Way (Ansonia) |
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CT - U.Way
of Eastern Fairfield County |
CT - United
Way of Branford |
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CT - United
Way of Norwalk & Wilton |
CO - Mile
High United Way |
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DE - United
Way of Deleware |
FL - Pinellas
County |
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MD - United
Way of Central Maryland |
ME - United
Way of Eastern Maine |
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MI - United
Way of Michigan |
NJ - United
Way of Atlantic County |
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NJ - United
Way of Bergen County |
NJ - United
Way of Burlington City |
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NJ - United
Way of Ocean County |
NY - UW
of Chemung & Stueben Counties |
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NY - United
Way of Dutchess Cty |
NY - United
Way of Northeastern NY |
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NY - United
Way of Orange County |
NY - United
Way of the Tri State |
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NY - United
Way of the Southern Tier |
OR - United
Way of Umatilla County |
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PA - United
Way of Alleghaney County |
PA - United
Way of Butler County |
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PA - United
Way of Chester County |
PA - United
Way of Erie County |
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PA - United
Way of Southeastern PA |
PA - United
Way of Southwestern PA |
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WI - United
Way of Fox Cities |
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- Lyme
Disease Foundation
- PO
Box 332
Tolland, CT 06084-0332
Phone: 860-870-0070 Fax: 860-870-0080
- email: info@lyme.org
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Web Master
Dr. Leonard Schuchman |
webmaster@lyme.org (Please
NO Medical
Questions)
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