Press Release: Announcing the Launch of Our New Website

Accomplishments

Lyme Disease Foundation logo tick

Table of Contents


A. Significantly Increased Public Awareness & Knowledge of Tick-borne Diseases


1. Established the world’s 1st Lyme Disease 501(c)(3) nonprofit the Lyme Disease Foundation, Inc. (“LDF”). Every donation is tax deductible.

This was in response to requests by Paul Duray, MD, John Post, DVM, and Edward Bosler, PhD for Karen Vanderhoof-Forschner, JD, LLM, MBA, BS, CPCU, CLU and Thomas Forschner, CPA, MBA to establish the world’s first nonprofit dedicated to Lyme disease (“LD”). This charity rapidly expanded to include other tick-spread diseases. Karen’s motivation was that she had passed on her infection to their son Jamie during her pregnancy and Jamie became multi-handicapped from the infection and was deteriorating.

Knowing that it would take a mix of specialties to address the world-wide problem, Karen, a dynamic leader, selected a board that was comprised of diverse experts: researchers, a veterinarian, front-line healthcare professionals, an entomologist, the NIH scientist who discovered the Lyme bacterium, business leaders, advocates, and eventually Federal Congressman Berkley Bedell. Attorney Karen Vanderhoof-Forschner chaired the board of directors. The LDF has been trailblazing in its approach to education and research, always adhering to science and correcting a series of scientific myths.

The LDF has always been a clearinghouse for information and referrals for the public and an educational source that functions as an incubator/think-tank and network for scientists, researchers, and healthcare providers. The LDF has also been protecting people and pets from vector-borne diseases since 1988.


2. Conducted the first and only LD telethon, raising awareness and funds to help start the LDF.


3. Moved recognition of Lyme disease from 0% in 1988 to 88% in 1990

Through a highly successful high-impact worldwide media campaign that resulted in hundreds of thousands of letters and calls to the LDF from a wide variety of people seeking help. e.g. researchers seeking collaborators or funding; patients seeking help or doctor referrals; businesses seeking to start a prevention program for their employees; and school children doing reports on Lyme disease.

TIME Magazine stated that the LDF’s educational campaign was the “most successful awareness campaign” of any health organization. 


4. Worked with the Centers for Disease Control to establish the first case definition for Lyme disease.

This clarification was added after the LDF negotiated the wording,

“They (case definition criteria) should not be used as sole criteria for establishing clinical diagnosis, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, providing standards for reimbursement, or initiating public health actions.”

In 2022, it was discovered that the CDC deleted this wording and promulgated a false narrative that the 2-tier western blot test was diagnostic, despite knowing that in 1998 the world's largest clinical trial in Lyme disease proved that was untrue.


5. Created the first and only CDC-approved Workplace Awareness & Prevention education program.

This is a digital program with an implementation handbook to help an employer conduct the employee awareness and protection program so that their employees can avoid exposure to ticks. Tom Forschner moderated this program.


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

Over 100 groups across North America existed.


7. Created a sample permission letter to send home with students, for use before class members participate in out-door trips.


8. Appeared on worldwide television educating people about Lyme disease. This resulted in thousands of letters and calls being received every day, for months.

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

  • Oprah TV Show
  • MTV's Real World
  • TV Tokyo (Japan)
  • PSA’s w/Billy Joel
  • TV Ashai (Japan)
  • Maclean’s (Canada)
  • CBC (Canada)
  • 20/20 (worldwide)
  • TODAY Show
  • CBS News
  • Nightline
  • NBC News
  • Family Circle
  • Sally Jesse Raphael
  • The Home Show
  • Sonja Live
  • NOVA
  • Canadian Broadcasting Corporation, Inc.
  • Boston Globe
  • Inside Edition
  • Univision
  • Geraldo
  • ABC News
  • USA Today
  • Washington Post
  • PBS
  • TV Ashai (Japan)
  • CNN News
  • Time Magazine
  • Essence
  • Reader’s Digest
  • Belgium documentary
  • American Health
  • 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
  • Bloomberg news.

9. Directly helped 250,000 households through emails, phone calls, faxes, and mail. We stopped counting in 2012.


10. Created the only training program for Self-Help (Support) Group organizers.

This is CDC-funded and approved video-based instructional program has two group facilitator handbooks. 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. This is designed to help someone establish a local self-help/support group.


11. Created the only Community Educator Program.

The Community Educator Program is a CDC funded and approved program that provided people across the country with a tabletop display, carrying case, and digitally-based documents (it originally had slides). This program now has a power point & script in order to empower the public in educating their community with accurate information about prevention and early detection of emerging tick-spread diseases. The pictures and charts were also CDC-approved. A part of the board was left blank so the educator could customize this for their local area.


12. Conducted the first and only Train-the-Trainers’ tick-educational programs for community educators and support group leaders to teach them about ticks and tick identification.


13. Produced two award-winning educational TV Programs. Both aired on network TV:

a. Dr. Ticked-Off and His Tick Patrol, an award-winning elementary education puppet-based program which aired on Public Broadcasting Stations (PBS), was CDC-funded and 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 Spanish and English and open-captioned for the hearing impaired, 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.

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

This 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's 4th place award in TV Healthcare Education.

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

This program has been highly praised for the superior non-scary content and its clear format in order to facilitate learning. In addition to the puppet programs, there are two other programs that were funded and approved under a CDC-grant.

  • The Middle School Program, “Lyme Disease & The Scientific Method,” has students conducting a survey asking fellow students questions about what they know regarding ticks and prevention of tick-bites. Included are Instructions for tabulation, an instructional video, and 2 lesson plans ( 1-day program and a 4-dqy program.
  • The High School Program is a video titled, “Lyme Disease: What you Should Know,” presented in a Question & Answer format. Karen Vanderhoof-Forschner is the host of this program. This can also be used for parent programs.

15. Created the first patient video, named "The Video Quilt," where patients share their struggles with Lyme disease.

This gave patients a voice and was used to educate members of Congress and others.


16. Invented Lyme Awareness Week with Senator Joseph Lieberman

This started out as legislation (a resolution) that designated a day in the summer as "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 and to seek help in finding the truth about Lyme disease so that together we could find real solutions.


17. Started the first and only Kids Poster Campaign, where the LDF displayed kid-submitted 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 from the LDF. This event was halted when Covid closed-down the country. Senators Lieberman, Dodd, Santorum, and Representative George Hochbrueckner were instrumental in hosting this campaign.


18. Initiated the world’s first doctor referral program connecting patients with doctors knowledgeable in diagnosing and treating tick-borne disorders.


19. Developed the first color picture brochure that showed pictures of Lyme rashes on dark skin, making sure that people of color are not left behind.


20. Karen and her representatives presented hundreds of educational programs across the USA and other countries.


21. Designed and distributed 3 million brochures with information about ticks, diseases they spread, pictures of rashes on diverse skin colors, and an explanation of testing issues.


22. Designed and distributed 4 million of the world’s first trifold wallet-size tick card with pictures of the variety of ticks biting people and pets, and the diseases they spread.


23. Created a variety of informational pieces to help educate diverse groups. This included cards, packets, brochures, compendiums, photo displays, educational programs, and newsletters.


24. Established a science-based award-winning website that received about 500,000 views a month from 410,000 sites around the world. This had a major overhaul in 2024.


25. Hired two nurses & two doctors to answer phone calls and respond to written requests.


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

"Sally", a blind lady, wrote to us seeking information for herself. However, she could not find anything for the visually impaired. In response, the LDF established an audio phone-based system to allow people with poor sight to access information on their phone. This phone had 25 options of prerecorded information. This received 60 calls a day (22,000 a year) until the technology changed. Since this system was available for free in the day and night, everyone had access to information.


27. Raised $13 million in donations

The LDF raised $13 million from a wide variety of sources: the public, businesses, the Federal Government, golf tournaments, conferences, and a telethon. The LDF has a very low overhead rate of 13%.


28. Produced and distributed print, radio, and TV Public Service Announcements with celebrities.


B. Honors, Awards, Proclamations


29. The LDF and the Chair, (Karen Vanderhoof-Forschner) have been awarded numerous honors and awards from the Federal government, professional societies, as well as national and local groups.

Please see the awards area of this section. The LDF was even presented with an award by Dr. John J. McGowan, Deputy Director for Science Management and Executive Officer at the National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH) citing the quality of LDF conferences and high standards of LDF corporate responsibility.


C. Legislation – Teamwork to improve access to proper healthcare


30. Developed a team of Lyme Group leaders to work together as a legislative coalition. This group, known as the LDF Community Caucus, worked successfully with Congress for decades.


31. The LDF was instrumental in co-leading the effort in Connecticut to secure mandated insurance coverage of Lyme disease diagnosis and treatment, as recommended by a patient’s doctor.


32. Obtained the first federal funds for Health and Human Services (NIH & CDC) with the leadership by Sen. Joseph Lieberman, to establish Lyme disease intramural and extramural research grant programs.

This was the first formally dedicated funds for tick-borne diseases. It also moved tick-borne disease funds from the arthritis division of NIH to the infectious disease division. That movement of funds to the infectious disease area meant that a wider group of researchers could research the multi-systemic nature of the disease. e.g. neurologic, cardiac, ocular, gestational, and gastrointestinal manifestations.


33. Conducted the first governmental rallies to thank NIH, CDC, and the Military for their efforts in research and prevention of tick-borne diseases for the public and our troops.

Representatives from each group attended the rallies and presented their research plans for the coming years.

Go to: 8. Advocacy, Choose Lyme Rally, or Poster Campaign.


34. Convinced Senator Ted Kennedy to hold a Senate H.E.L.P. [Health, Education, Labor and Pension) Committee Hearing on Lyme disease.

Assisted in the event being held. Karen testified at the hearing. Go to: 1. About the LDF, 2.b. Board of Directors and advisors, e. Karen Vanderhoof-Forschner, 17. Kennedy Hearing (photo).


35. Organized the first “Lunch & Learns” for members of Congress.

These programs included medical experts and patients updating members of Congress and their staff about Lyme disease and other tick-borne diseases. Congressional members and staff attended.


36. Added language to the Federal Budget on Lyme disease.


37. Successfully secured legislation to enact a Tick-Borne Working Group, which passed the Senate.

Go to: 6. Advocacy, Legislation (in process).


D. Scientific Education & Research


38. Funded $500,000 in research grants resulting in 130 peer-reviewed published articles expanding scientific knowledge of Lyme disease and coinfections.

Published the Journal of Spirochetal Diseases and Tick-borne Disorders.


39. Was the first to address highly controversial scientific topics, 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.


40. First to directly fund Health and Human Services 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 patent was put on the shelf until technology could automate its use. That day has come! Unfortunately, no one is there to complete the research because the employees are no longer there.


41. 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 findings and network for new research studies.


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

Attendees include a diverse mix of healthcare professionals 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 rssearchers from the National Institutes of Health, the Centers for Disease Control & Prevention, the Military, state health departments, and academia from around the world.


43. Invented a free “Public Forum” for LDF Scientific Conferences, so that the general public & patients could hear a summary of the day’s scientific discussions from the presenters and ask them questions.

These were held during an evening of our Scientific Conference.


44. 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.


45. 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. Go to: 6. Education, 4. Scientific, a. articles, journals, books, Pregnancy. Select Journal of Spirochetal & Tick-borne Diseases.


46. First to sponsor a special Lyme disease edition of the journal Clinical Infectious Diseases (IDSA).


47. Two LDF Board members wrote the Lyme disease section of Conn’s Current Therapy.

Go to: 6. Education, 4. Scientific, a. articles, journals, books, Pregnancy. Select Lavoie’s or Burracano’s version of Conn’s Current Therapy.


48. 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 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 for our BC conference and the Isabella Stewart Gardner Museum for our Massachusetts conference. Attendees brought their families and made the conferences a vacation trip.


49. First to conduct scientific Lyme conferences in California, Pennsylvania, Texas, Massachusetts, Illinois, Colorado, Connecticut, and New Jersey. The LDF even held an international conference in British Columbia, which was Canada’s first scientific Lyme Conference.

Go to: 6. Education, 4. Scientific Education, b. LDF Scientific Conferences & Compendiums, Select you desired conference.


50. 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 meant 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. Go to: 6. Education, 4. Scientific, b. LDF Scientific Conferences, 16. Chicago, Ill, March 1998.


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

Coinvestigators included healthcare attorney Karen Vanderhoof-Forschner, JD, LLM, BS, CPCU, CLU, President & founder of the Lyme Disease Foundation, Inc.; a researcher at Lockheed Research Lab and 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 given a patent for a mathematical formula he invented. Go to: 7. Research, select Cost to Society.


52. The first to conduct a Pregnancy & Lyme monitoring study.

Go to: 6. Education, 4. Scientific Education, a. Articles, Journals, Books, Pregnancy, 1. Pregnancy & Borrelia, select either the presentations or articles.


53. Established a Clearinghouse of information regarding pregnancy & LD scientific articles and make them available to the public.

Later placing and them online to help everyone.


54. The first to incorporate pregnancy & Lyme lectures at our conferences.

This would include animal and human studies, pathology, and outcome assessments.


55. Karen was 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.


56. Was the first to speak-out to the public, media, and medical experts regarding the risk of adverse outcomes to pregnancy women who contract Lyme disease.


57. Was the first to research and advocate for care and treatment of pregnant women who contract Lyme disease.


58. 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!


59. Developed the first brochure covering pets & livestock and Lyme disease. This was approved by multiple veterinarians.


60. 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.


61. Worked with government protection services to safeguard themselves and their protectees from tick-bites and disease.


62. Served as a referral source for Federal, state & local governments, medical groups, and hospitals.


63. First to speak out about the dangers of malaria therapy as a treatment for Lyme disease.


64. 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.


65. Participated in 2 satellite media tours to educate reporters aware of the issues with Lyme disease.


66. Organized a Press Conference in N.Y.C. in order to educate reporters about Lyme disease.


67. The first to present poster displays of the Cost-to-Society at scientific gatherings.


68. Developed a book of Lyme lived experiences by patients so others could understand what the patients were experiencing.

Go to: 6. LDF Library, 3. Books, d. Faces of Lyme disease.


69. The first organization that had presenters who disclosed that the currently used antibiotics did not eradicate all the Lyme bacteria, potentially leaving all patients infected with Lyme disease.

Scientifically proven over 10 years ago.


70. LDF Board member Paul Lavoie, MD was the first person in the world to match bacteriostatic antibiotics (which kill bacteria only as they reproduce) to the slow reproduction time of the Lyme pathogen.

Dr. Lavoie was a rheumatologist who treated AIDS and tuberculosis (“TB”) patients. He applied his knowledge of basic science and TB treatments to Lyme disease and advocated longer-term treatment.

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