Press Release: Announcing the Launch of Our New Website

About The Lyme Disease Foundation, Inc.

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LDF Mission

Find the truth, tell the truth about Lyme disease and other vector-borne disorders (broadened in 2012, from tick-borne diseases) in order to discover better prevention and treatments for these diseases.

LDF Goals

  • Advocating for scientific truth in research, diagnosis, and treatment of vector-borne diseases;
  • Stimulating research and medical progress with respect to vector-borne diseases, with the ultimate goal being to minimize the risk of such diseases to people, livestock, and their pets;
  • Improving public, patient and healthcare professionals’ knowledge of prevention, early diagnosis, and treatment of vector-borne diseases;
  • Creating an extensive website of information about vector-borne diseases to assist with research and educate relevant communities;
  • Increasing patient access to care and support; and
  • Educating healthcare providers as well as state, local, and national governments about the complexities of preventing, diagnosing, and treating vector-borne diseases.

The Lyme Disease Foundation, Inc. (“LDF”) is an innovative award-winning 501(c)(3) science-based international nonprofit dedicated to fostering Education, Research, and Advocacy about vector borne diseases, specifically tick-borne infections.

The LDF is the first tick-borne disease nonprofit in the world. It was established at a time when almost no one knew about tick-spread diseases.

The LDF has held 27 scientific conferences, published a scientific journal, and awarded $500,000 in research grants, which includes funding for the National Institutes of Health to develop a novel Lyme disease direct detection test. In addition, the LDF has produced 2 award-winning TV programs (airing on PBS & Lifetime TV Network); a K-12 educational program with lesson plans, worksheets, and video (CDC-funded & approved); a Support Group (“Self-Help”) training program with two training handbooks (CDC-funded & approved); a Business Education program (CDC-funded & approved); a Community Educator kit with a poster display, travel case, color pictures, a video, brochures, and tick-cards (CDC funded & approved; and has testified in state and federal hearings. 

The LDF, with the strong support from Senator Lieberman, established the first tick-borne research program at NIH and the CDC. This specifically was the first dedicated funds for Lyme disease national research and education. The LDF was instrumental in co-leading the successful effort in Connecticut to secure mandated insurance coverage of Lyme disease diagnosis and treatments.

The LDF serves as an incubator to develop new collaborations and verify/debunk scientific claims. The LDF and its researchers corrected the false scientific facts about “Lyme arthritis,” resulting in a name change to “Lyme disease,” in recognition of the multisystemic nature of the disease and moving the authority over the disease from the arthritis division to the infectious disease division of NIH. The LDF’s focus has been on scientific facts and eliminating science fiction. 

THE LDF also serves as an international clearinghouse for scientific information and facilitating research collaborations.

The LDF, with zero funds, no political connections, and 2 committed parents with business expertise ran what NIH Director Dr. Bernadine Healy  was quoted as saying, “By organizing their own scientific meetings, advocates help assess the state of the research for a particular disease, and look for areas that need strengthening. “That’s unique to them,“ says NIH director Healy. “They are setting bold, far-reaching goals.”

The LDF has been so successful that it received an award and praise from the National Institutes of Health for the LDF's efforts, scientific conferences, and high ethical standards. The LDF has also received awards from numerous state, local, and national groups

View Awards & Commendations →

Little did Karen and Tom realize that they were at the tip of the iceberg of worldwide cases because in 2022, Dong, et al published a meta-analysis proving that 14.5% of the world’s population (1.144 billion people) were infected with Lyme disease! That does not take into account the 36% of cases that never seroconverted to a positive test. In Vaccination against LD with Recombinant Bb etc., Steere et al. proved, and SmithKline confirmed, that 36% of culture positive patients remained seronegative throughout the life of their disease. However, those patients were not counted in the 14.5%.

Starting the Lyme Disease Foundation

One Mother, One Mission

The Lyme Disease Foundation, Inc. was initially founded due to a lack of available information, awareness, and general understanding of what Lyme disease was, and what ticks really spread. The medical community and government agencies were asleep to the reality of what was happening to people. It was clear that someone had to do something and that someone was Karen Vanderhoof-Forschner, JD, LLM, BS, MBA, DHL, CPCU, CLU and husband Tom Forschner, CPA, MBA, BA. Karen and Tom are the global change agents that revolutionized the world’s knowledge about Lyme disease.

Karen was first bitten by a tick in 1985 in Stamford, CT, during her pregnancy and had the “hallmark” bulls-eye rash, flu-like symptoms, and swollen knees. Her doctor had no idea what any of those symptoms were and told her to ignore them. Critical information about Lyme disease had not traveled the 70 miles from Lyme, CT to Stamford, CT in the 10 years after being “discovered”! This medical ignorance  despite a Lyme disease fetal demise scientific publication appearing 7 months before her son’s birth. Karen and Tom’s son (Jamie) was the victim of that ignorance.

Once Karen finally got a diagnosis, she found that the medical communities and public were doing nothing about the disease. Between her own health deterioration during pregnancy, her placement in a wheelchair and demise of her consulting firm due to her disability, the loss of her 5 pets, and now the multi-handicapped condition of her own son, the void became too great and change had to happen! Karen rolled up her sleeves and created a highly effective world-wide media campaign which resulted in “Lyme disease” becoming a household term within two years.

Karen also traveled back to her home in Stamford, Ct and collected Lyme ticks from her back yard. The tests and analysis proved a high Lyme infection rate in Stamford, Ct. To protect the public's health, Karen sent the test results to the Director of Health of Stamford. He then initiated Stamford's first tick-testing program! Then, the LDF held a medical conference in Stamford to educate health care professional in the area. Without Karen, Stamford would never have known its plight!

Between working with scientific experts, legislators, officials, law makers, government entities, schools, universities, and even private businesses, Karen Vanderhoof-Forschner blazed a path to have answers and a cure for what happened to her son, her family, herself, and her neighbors.

In 1988, Karen cofounded the Lyme Borreliosis Foundation (“LBF”) [the name was later changed to “Lyme Disease Foundation, Inc.” (“LDF”)] with husband Thomas Forschner and gathered a team of scientific, business, and advocacy experts in tick-borne diseases as Board members. Karen (a full-time volunteer at the LDF since its organizational activities in 1987) and Tom (a current volunteer) hoped to find a cure for their congenitally infected son who over time had become multi-handicapped. Karen discovered that most of what was “known” about Lyme disease were just dogma and assumptions, without any scientific basis. The LDF and its team set about finding the truth and debunking the existing junk science. Karen closed her lucrative consulting firm to try to save her son.

At the LDF, Karen fought for every step she took, put her foot in every door she could find, and worked with anyone who would work with them. The diverse and dedicated team of board members trail-blazed into a world unaware of this disease, raising awareness from 0% to 88% within 2 years! Karen established multiple educational programs aimed at different audiences. This included: producing two award-winning TV programs; a set of k-12 school programs; an employer-employee tick-bite prevention program, a program on how to establish and conduct support groups (complete with handbooks, flyers, brochures, and a video); informational packets, brochures, tick ID cards, community education programs, Congressional education programs, medical posters, and slide shows/ power points (CDC-funded and approved).

There’s a desperate need for the record to be set straight, and for those who are patients or treating Lyme to be heard. Even those who don’t know what Lyme disease or Tick-Borne illnesses are, need to be given access to all of the information and education they need so they can make informed choices. The newest chapter of the LDF has only just started, and we have every intention to let the public know what we discover.

Our mission statement is simply, “Find the truth. Tell the truth.” We're dedicated to finding the scientific truth about the current state of Lyme disease, tick-borne illnesses, & associated diseases, and finding ways to improve the governments response, as well as increase access to curative and affordable care, diagnosis, and treatments. The LDF is willing to address the tough issues. One of our main focuses is to enable access to education, correcting the scientific falsehoods, and provide the real story of Lyme disease.

LDF’s media program has been highly successful. After being featured on an international TV program, the LDF started receiving 15 – 20 trays of mail every day, for months. The daily office and home phone calls outpaced the mail. With such need, it became clear the LDF needed to be staffed. Tom was hired as the Executive Director by an independent subcommittee of the Board. Tom managed all operational aspects. Karen managed the outreach/educational aspects of the foundation, from media interviews of new scientific advances, to planning and conducting conferences. The LDF hired 2 nurses and 2 doctors to handle the inquiries and help develop programs.

The LDF’s effort resulted in increased research funds for federal, state, and local governments; assisted in the rapid growth in recognition of the disease in new states; and improved widespread understanding of emerging new diseases. Public needs and daily inquiries to the LDF has changed as people learned more about the disease(s). Every day, year after year,  the LDF was interacting with an ever-increasing diverse and well-informed population (e.g. donors, state & federal agencies, members of the U.S. Congress, state legislators, legal counsel, healthcare providers, corporate executives, and media). They kept up with this challenge by always creating new informational products to explain the new scientific findings.

20 years passed and Karen was forced to temporarily close the LDF due to multiple bone breaks from falls on ice and being in and out of physical therapy to relearn to walk. Despite being told that she would never have a useful leg due to her shattered kneecap and spiral fracture to her femur, Karen persisted and relearned to walk … twice.

Today, she persists with finding the truth and getting that information to scientists and the public.

Past Board Members

Other past Board members include: Elizabeth C Burgess, DVM, PhD, Professor School of Veterinary Medicine, Madison, Wisconsin; Francine Newman, President, CIGNA RE; Ed Bader, CPA, Arthur Anderson, Bader & Associates; Ira M. Maurer, JD, President, The Maurer Law Firm, LLC; Joseph Burrascano, MD, Consultant to Igenex.

About Jamie

James (“Jamie”) Thomas Cronin Vanderhoof-Forschner July 7, 1985 to June 21, 1991.

We have included pictures of Jamie so that everyone understands the plight of congenital Lyme disease children. Jamie contracted the disease while in utero. Despite his illness, Karen and Tom tried to give him as normal a life as possible. Jamie’s neuro-ophthalmologist trained under J. Lawton Smith, MD. Dr. Smith was on the NIH Tuskegee Advisory Committee and took care of the Tuskegee Experiment’s congenital children. From Dr. Smith’s training, Jamie’s doctor recognized the damage to the back of Jamie’s retina as proof of a congenital spirochetal infection.

Karen and Tom fought against a medical system that assumed (without any scientific proof) that a few pills or one IV treatment killed all the spirochetes. Indeed, Jamie’s doctor said that the Tuskegee adult patients that were treated with antibiotics, all still had live syphilis spirochetes in their brains on autopsy.

Jamie had been treated by IV amoxicillin, claforan, and ceftriaxone. He died during a relapse when his brain crushed itself. On autopsy he still had spirochetes in his optic nerve.

Jamie 1985-1991

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