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- The
Lyme Disease Foundation
- PO
Box 332
Tolland, CT 06084-0332
Phone: 860-870-0070
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- email: info@lyme.org
(please
convert any documents you would like to send to the
LDF into a PDF and then send via email. Thank you)
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Help
Support the LDF
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Your
donation is tax deductible
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New
Lyme Awareness Bracelets Available
here.
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Get
Your Tick Removal Kits here.
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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
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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)
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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.
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 |
| Ct.
Agricultural Experiment Station |
CVS
Pharmacies |
| Family
Circle Magazine |
FrontierNet |
| Glaxo
Pharmaceutical |
GreenLight
Sales Company |
| Home
Depot |
Igenex
Laboratory |
| Illinois
Department of Health |
L'Oreal |
| Medical
Diagnostic Laboratories |
Payless*Cashways |
| Rotary |
SmithKline
Beecham |
| Speciality
Labs |
Texas
Department of Health |
| Wal*Mart |
Wampole
Laboratories |
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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.
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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:
| AL
- United Way of Central Alabama |
CA
- United Way of the Bay Area |
| CA
- United Way of San Diego |
CT
- Valley United Way (Ansonia) |
| CT
- U.Way of Eastern Fairfield County |
CT
- United Way of Branford |
| CT
- United Way of Norwalk & Wilton |
CO
- Mile High United Way |
| DE
- United Way of Deleware |
FL
- Pinellas County |
| MD
- United Way of Central Maryland |
ME
- United Way of Eastern Maine |
| MI
- United Way of Michigan |
NJ
- United Way of Atlantic County |
| NJ
- United Way of Bergen County |
NJ
- United Way of Burlington City |
| NJ
- United Way of Ocean County |
NY
- UW of Chemung & Stueben Counties |
| NY
- United Way of Dutchess Cty |
NY
- United Way of Northeastern NY |
| NY
- United Way of Orange County |
NY
- United Way of the Tri State |
| NY
- United Way of the Southern Tier |
OR
- United Way of Umatilla County |
| PA
- United Way of Alleghaney County |
PA
- United Way of Butler County |
| PA
- United Way of Chester County |
PA
- United Way of Erie County |
| PA
- United Way of Southeastern PA |
PA
- United Way of Southwestern PA |
| WI
- United Way of Fox Cities |
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Lyme
Disease Foundation
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PO
Box 332
Tolland, CT 06084-0332
Phone: 860-870-0070 Fax: 860-870-0080
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email: info@lyme.org
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Web
Master Dr. Leonard Schuchman
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webmaster@lyme.org
(Please
NO Medical
Questions)
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This site is © Copyright Lyme Disease Foundation
2004-2011, All Rights Reserved.
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