Established the first countrywide network of Support Groups, Community Educators, and healthcare providers.

Over 100 groups across North America existed. 

Appeared in Globally Relevant Programs

   The LDF has appeared in radio, print, & TV media, reaching millions. 

- Oprah TV Show - MTV's Real World  - TV Tokyo (Japan) - PSA’s w/Billy Joel - TV Ashai (Japan) 

- Maclean’s (Canada) - 20/20 (worldwide) - TODAY Show - CBS News - Nightline

- NBC News - Family Circle - Sally Jesse Raphael - The Home Show - Sonja Live

- NOVA - CBC (Canada) - Boston Globe - Inside Edition - Univision 

- Geraldo - ABC News - USA Today - Washington Post - PBS

- TV Ashai (Japan) - CNN News - Time Magazine - Essence - Reader’s Digest

- American Health - Readers Digest - Consumer Reports - Wall Street Journal  - Red Book

- Modern Maturity - Family Circle - U.S. Pharmacist - Sports Illustrated - RN Magazine

- Star Ledger - Chicago Tribune - Good Housekeeping   - Parents - Outdoor Life

- Pet Age - Golf Digest - New York Times - American Baby - Newsweek

- Equinox (Canada) -The Journal Inquirer - The Hartford Courant - US News & World Report

Created the only training program for Self-Help (Support) Group leaders

This was CDC-funded and is CDC-approved. This program is hosted by Dr. McBride, former Sr. V.P. of Advocacy at Children’s Hospital in Washington, DC. The LDF referred patients to the support groups in their area for help and attendance at supportive meetings. The program is a digital video and two handbooks.

Created the only Community Educator Program. This is CDC-approved and funded. 

This provides people across the country with a tabletop display, carrying case, and a thumbnail with digitally based documents.  This program had a power point & script which empowered the public to accurately educate their community with scientifically credible information about prevention and early detection of these emerging diseases. The pictures and charts are also CDC-approved. A part of the board was left blank so the educator could customize this for their local area.

Produced TWO award-winning educational TV Programs

Dr. Ticked-Off and His Tick Patrol is an elementary education puppet-based program, which aired on Public Broadcasting Stations (PBS), was funded under a grant from the CDC, and is CDC-approved. This is divided into a variety of educational programs for young children. 

This program won a Silver Award in the International Communication Film & Video Festival.

The 4 kids’ videos together are called Dr. Ticked-Off and His Tick Patrol. These are bilingual, open-captioned for the hearing impaired, and were hosted by Emilio Delgado (“Luis” from Sesame Street). One puppet is in a wheelchair, to show diversity. The programs are in both Spanish and English and open captioned in order to reach a wider population. 

There are 4 TV programs: 

• Dr. Ticked-off & his Tick Patrol; 

• El Dr. Ticked y su Patrulla Antigarrapatas; 

• WTIK Special News Flash – Do a Tick-Check!; 

• WTIK Flash de Ultima hora – El Chequeo de Garrapatas.

Produced the world’s first Lyme documentary, Faces of Lyme Disease, which aired on Lifetime TV network. 

      This program was highly praised by teachers for its non-scary approach to facilitating learning and its clear format. The program won:

• Rx Club Top Honors for Educational Excellence in the International Competition; 

• The Global Globe Award in recognition of outstanding achievement in the Global’s International Healthcare Competition; and 

• New York Film Festival 4th place award in TV Healthcare Education.

Distributed the only CDC-approved K-12 educational programs to 10,000 schools across the country.

 In addition to the puppet programs (also see 13.a. above), there are two other programs that were funded and developed under a CDC-grant.

The Middle School Program is “Lyme Disease & The Scientific Method: An Investigative Survey on Personal Protection.”  This has the students conducting a survey of fellow students in order to learn what their colleagues know about prevention of tick-bites and about ticks. Instructions for tabulation are included, as are an instructional video and 2 options for teacher lesson plans.

The High School Program is a video titled, “Lyme Disease: What you Should Know,” presented in a Question & Answer format. 

Created the first patient video, “Faces of Lyme Disease” where patients shared their struggles with Lyme disease

This gave patients a voice! This has been on our website and was used to educate members of Congress.  

Invented Lyme Awareness Week with Senator Joseph Lieberman

This started out as legislation (a resolution) that designated a day in the summer as the Lyme Awareness Day. However, when the Republicans took over, they decided they would no longer entertain resolutions because of cost considerations. Therefore, the LDF declared May as Lyme Awareness Month, to enable the media to report about prevention techniques ahead of prime outdoor season. Every year in May, the LDF held a DC Rally to help Congress and Federal agencies understand the dire plight of patients, the negative impact on families, and to seek help in finding the truth about Lyme disease. 

Started the first and only Kids Poster Campaign

The LDF displayed kid-summitted posters in the Senate Rotunda during Lyme Awareness Week. This helped involve parents, teachers, and students of all ages to learn how to prevent tick-bites and understand the difficulties patients have in getting diagnosed and treated. Members of Congress loved this display! Every person who submitted their work for this campaign received a Certificate of Participation. This was halted when Covid closed-down the country. Senators Lieberman, Dodd, Santorum, and Former Representative Berkley Bedell, and Representative George Hochbrueckner were instrumental in hosting this campaign.

Started the world’s first doctor referral program

Connecting patients with doctors knowledgeable in diagnosing and treating tick-borne disorders has been, and always will be our hope for empowering patients to take their healthcare back into their hands.

Designed and distributed 3 million brochures, and counting!

With information about ticks, diseases they spread, pictures of rashes on diverse colors of skin, common symptoms, and an explanation of testing issues.

Designed and built a computerized/automated 800-phone number system with recordings of information in order to reach marginalized populations.

Sally, a blind woman, wrote a letter asking the LDF seeking information for her and others with the same impairment. So, the LDF established an audio system to allow people with poor sight to access information. This received 60 calls a day (22,000 a year) for years. We are determined to ensure education reaches anyone and everyone who needs it, and information is put into the hands of those seeking it.

Raised $13 Million in donations

From the public, businesses, the Federal Government, golf tournaments, conferences, and a telethon. The LDF has a very low overhead rate of 13%. This money supported the activities contained in this summary of LDF Accomplishments. New donations are need to keep the progress moving forward.

We were the first to address highly controversial scientific issues

Including but not limited to: Pregnancy, animal models, the widening manifestations, lack of a test to prove anyone is bacteria-free (cured), coinfections, the non-existence of Ixodes dammini, and deaths due to tick-spread diseases. 

First to directly fund Health and Human Services

The development of a perfected diagnostic test – with no false positives and no false negatives. This was an LDF grant to NIAID for Rocky Mountain Labs. The test was developed and patented. Then, the work was stopped and the test was put on the shelf until technology could automate its use. That day has come! Unfortunately, no one is there to complete the research! 

Established the first USA annual scientific medically-accredited Conferences

To educate healthcare practitioners about tick-borne diseases, as well as to provide a forum for researchers to present their newest research findings and network for new research studies. 

Conducted 27 international scientific/medical conferences with continuing Medical Education credits and having a standard attendance of 300-500 treating doctors and researchers.

Attendees included a diverse mix of healthcare professionals, public health officials and researchers who came from America, Australia, Austria, Canada, England, Germany, Hungary, Ireland, Japan, New Zealand, Sweden, Switzerland, and the United States.  

Every conference had new innovative scientific presentations and forged new collaborations. Presenters included researchers from the National Institutes of Health, the Centers for Disease Control & Prevention, the Military, state health departments, and academia from around the world.

Produced Medscape Same-Day-Summaries

For one of the LDF’s conferences. Several hundred people who did not attend our conferences completed the readings and received continuing medical credits. This was an excellent way to extend the educational efforts from the conferences.

Started the world’s first tick-related Journal

Journal of Spirochetal and Tick-Borne Diseases. (“JSTD”). We distributed this for free to medical libraries across the country, in order to educate students and faculty about the latest research. This was later placed online and received 7,000 views a month from around the world. 

First to structure Conference Receptions

To foster networking and new research collaborations between the medical and scientific communities. Board members (especially Drs. Miller, Burgdorfer, Bosler, and public health official Rawlings, MPH) went to great efforts to talk to everyone and make introductions of attendees in order to facilitate new collaborations. A band was present and usually Dr. Ken Liegner, MD played trumpet with the band. We had our reception at interesting venues e.g. the Vancouver Aquarium in 1995 for our BC conference and the Isabella Stewart Gardner Museum in 1996. Families brought their families and stayed a few extra days in order to make these family vacations.

Produced an innovative free satellite medical conference with the Illinois Department of Health, and Illinois Academy of Family Physicians.

 In 1998, Smith Kline Beecham presented the absolute proof of seronegative Lyme disease. The SmithKline Beecham vaccine trial proved 36% of culture positive patients were western blot seronegative for the life of the patients Lyme disease. That means that patients who test negative on today’s tests CAN have Lyme disease. Therefore, science cannot rule-out Lyme disease with a negative test, cannot use a test to prove anyone is “cured,” cannot use an immune system-based test to determine which medication cured someone, nor show a vaccine was effective! A western blot test is not definitive! 

The first to research and publish on the Cost to Society of Lyme disease.

Coauthored by Irwin Vanderhoof, PhD, FLMI, CLU, CFA, ACAS, AIA, FSA, EA; an actuary; Clinical Professor of Finance at the NYU Stern School of Business; author of multiple Finance books & articles; and the second person in the world to have been granted a patent for a mathematical formula he invented. Coinvestigators included healthcare attorney Karen Vanderhoof-Forschner, JD, LLM, BS, CPCU, CLU, President & founder of the Lyme Disease Foundation, Inc., and a researcher at Lockheed Research Lab. 

The LDF President was the first woman to have a definitive case of transplacental Lyme (her baby subsequently died from the infection) and risk a subsequent pregnancy.

Karen took amoxicillin throughout the pregnancy and her daughter was born healthy, without any signs of infection. As a result, other mothers followed, and had healthy babies. 

The first to develop a treatment on tick-bite protocol

Which was constructed by pediatrician Dr. Andrew McBride. Despite this being the first such protocol, eventually it has become the standard of care for adults, children, and especially pregnant women! 

Convinced Dr. Oliver to do the experiment necessary to confirm or deny the existence of Ixodes dammini. 

 The CDC declared a newly discovered tick - I. dammini was the vector of the Lyme disease pathogen and based diagnosis on where this tick was theoretically located. One of the CDC employees was a coauthor on the paper claiming credit for the discovery of this “new” tick vector. This junk science “discovery” drove a misguided public policy. The CDC never conducted the research to prove this tick even existed.  In 1993, Dr. Oliver conducted the research that proved no such tick existed. [Conspecificity of the ticks Ixodes scapularis and Ixodes dammini (Acari: Ixodidae)], eliminating that claim. That mistake was a barrier to diagnosis and treatment of tick-spread diseases. 

Worked with creative consultants & public relations firms

In order to communicate a consistent message that would empower the public with knowledge to prevent tick bites and seek medical care when bitten by a tick.

The first to present scientific talks and poster displays of the economic burden of Lyme disease on Society at scientific conferences.

This was from original research regarding the Cost-to-Society of Lyme disease conducted by the LDF, NYU Stern School of Business, and the Society of Actuaries.