Press Release: Announcing the Launch of Our New Website

Karen Vanderhoof-Forschner

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Karen Vanderhoof-Forschner, DHL, JD, LLM, BS, MBA, CPCU, CLU

Karen Vanderhoof-Forschner is the trailblazing dynamic cofounder and Chair of the Board of Directors of the world’s first Lyme disease (“LD”) nonprofit, the Lyme Disease Foundation, Inc. (“LDF”). She is a published researcher; healthcare lawyer; innovative tick-borne disease thought leader; book author Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders; coproducer of award-winning TV programs; systems analyst; legislative analyst, strategic planner; and Lyme-historian. Karen is a fulltime volunteer in the scientific field of tick-spread diseases since 1985.

Attorney Vanderhoof-Forschner has a stellar educational background, has received many awards and accolades for her work in Lyme disease. Prior to starting the Lyme Disease Foundation, Inc. she had a successful consulting practice that focused on legislative research, mediating interdepartmental disputes, and innovating approaches towards new products and marketing. Karen has published articles in professional journals. She has a track record of leadership and innovation and has prior board and leadership experience. Since then she has been working with the Federal government on finding solutions for over 35 years.

Karen and the LDF were the catalyst of global awareness and research. Jamie, Karen’s son, acquired Lyme disease from her in Stamford, CT after she was bitten by an infected tick during her pregnancy. Karen had the typical “bulls-eye” rash and lost her sense of taste and smell. The doctor had no idea what the marks were from and told Karen to ignore everything. This was 10 years after the “discovery” of LD, in Lyme, Ct. and scientific information had not even traveled 80 miles! Unfortunately, there was no organization, nor group anywhere in the world that was dedicated to Lyme disease, nor anyplace she could call to find help. Her newborn son had repeated bouts of facial paralysis, damage to his retina only caused by an in utero spirochetal infection, lifelong vomiting, multiple life supports, and positive tests. Jamie was the victim of scientific misinformation and died in 1991 after a lifetime struggle with Lyme disease. He was 5.

After Jamie died, researchers found the Lyme pathogen in his optic nerve, despite his numerous IV treatments with a variety of IV antibiotics. That is when Karen realized that more antibiotics was not the solution. Science in 2020+ has proven that the protocol antibiotics, amoxicillin, ceftriaxone, cefotaxime, and doxycycline do not eliminate all of the Lyme pathogens. Despite the government’s and IDSA’s claims, there has never been a test to prove bactericidal cure.

To prove exposure to infected ticks, Karen took Professor John Post, DVM (University of Connecticut researcher) to her past home in Stamford and together they conducted tick drags in her former backyard. The results proved a high rate of ticks infected with the Lyme pathogen. Karen sent the report to Stamford’s Director of Health, Dr. McBride. Dr. McBride sent letters to all homeowners in the Stamford area warning them of this and initiated a tick-inspection program. Karen held a large scientific conference in Stamford to educate homeowners and their healthcare providers. The LDF held a free Public Forum for the public in the local area, where they could ask questions of all the speakers. Karen’s effort directly improved the worldwide public’s health.

Karen’s appearance on an international TV program in 1988 started a worldwide explosion of interest in Lyme disease. The following week 15 – 20 trays of mail from around the world started arriving at the LDF every day for months. Little did Karen or her husband know that they were on the tip of the iceberg of a previously unknown pandemic. In 2022, researchers proved that 14.5% of the world’s population (1.144 billion people) had been diagnosed with the Lyme disease via a positive test! That 14.5% excludes the 36% of infected people who test negative throughout the life of their disease.

The creation of the LDF started in 1987 when Karen’s dog Ruddy, who had LD, developed a rapidly growing untreatable form of bone cancer in his leg. The veterinarian said Ruddy was in great pain, there was nothing he could do to save the dog, and they should put him down. Karen called Paul Duray, MD (cancer researcher who published on congenital Lyme), John Post, DVM (veterinary pathologist), and Ed Bosler, PhD (NY State Health Dept. entomologist & researcher who collected ticks for Dr. Burgdorfer), and explained their situation. She invited them to her home to examine Ruddy (a show dog), do an autopsy, and take tissue samples, in the hopes that something could help Jamie or others. But, Karen had a catch. Each researcher had to share some new LD expertise with the others present. The researchers had read each other’s papers, but had never spoken. They were eager to exchange information. Research collaborations immediately formed. When the researchers heard of the Forschners’ business expertise, examined Ruddy, and saw Jamie’s plight, they asked Karen & her husband Tom to establish and lead the first organization dedicated to LD. Karen and Tom knew that if change was going to happen, and if their son was going to have a chance to survive, it depended on them. Karen and Tom accepted that challenge. Dr. Duray, Dr. Bosler, and Dr. Willy Burgdorfer (NIH discoverer of the Lyme pathogen) became founding Board members.

The Lyme Borreliosis Foundation, Inc. was incorporated in March of 1988. It was the world’s first Lyme disease nonprofit. Later, they changed the name to Lyme Disease Foundation, Inc.

Karen sat down and developed a strategy for the LDF. She wanted to focus on three areas: Research for a cure, Education for prevention, early diagnosis, and advocacy for patients and the doctors who treat them. She wanted the Board of Directors to be comprised of representatives from business, science and patient advocates. She used her extensive network of contacts to secure commitments from across the country to serve on the Board. California, Minnesota, New York, New Jersey, Texas, Massachusetts, Connecticut, Florida, and others have been represented. The core of its interactions was a philosophy of one health - decades before that concept was given a name. Truly the LDF was decades ahead of the mainstream!

Karen launched a high-profile media campaign that moved recognition of LD from 0% to 88% within two years (Gallup Poll '90), thus making "Lyme disease" a household term. TIME MAGAZINE termed this effort the "most successful awareness campaign" of any health organization. Lyme disease is now the #1 tick-borne disorder and is one of the fastest growing infectious diseases. The LDF is known for excellence, trailblazing, and is respected for its scientific integrity, education, research, and advocacy. They have worked in partnership with researchers and healthcare practitioners from coast-to-coast.

Karen started with scientific conferences. She organized and conducted 27 scientific conferences in North America, with emphasis on integrating basic science with healthcare practice. Karen compiled the compendiums with research publications from the speakers. Average attendance was 500 healthcare professionals and researchers. Conferences were held in: MD (at NIH); CT; NY; TX; PA; CA; FL; BC, Canada; MI; MA; and a satellite conference in Illinois. The LDF moved the conferences around North America and included international researchers with differing specialties in order to educate healthcare professionals, researchers, advocates, patients, and the media about tick-spread diseases. This also fostered new research collaborations. The TV show 20/20 and a CNN news report showed the LDF conferences on their networks.

Based on seeing the needs of patients across the world, she built a network of support groups & Community Educators, established research programs, created brochures of scientifically accurate information about ticks and the diseases they spread, filmed bilingual educational programs that were funded and approved by the CDC, produced two award-winning TV programs, produced a telethon, conducted Congressional Education days, rallies, and speeches, and funded $500,000 in research, including research within NIH into a specific and sensitive direct detection test. Eventually, the LDF started its own peer-reviewed scientific journal, with the top researchers in the tick-borne community as its editors. Karen also developed a media campaign that included print (magazines), video (TV), and audio (radio) Public Service Announcements.

Ms. Vanderhoof-Forschner has been very active on both national and local public policy issues. She worked with federal and state governments, including those in Canada, Ireland, and Australia. Karen cocreated & conducted Congressional Lyme Awareness Month Press Conferences, DC Rallies, and Lunch & Learns for members of Congress; successfully lobbied for passage of Lyme Awareness Resolutions; coauthored Congressional Bills and Appropriations Report Budget language for Lyme disease. She organized Press conferences, conducted multiple presentations, and helped pass insurance reform that mandated expanded Ct.’s insurance coverage for LD.

Karen and Irwin T. Vanderhoof PhD, BS, FLMI, CLU, CFA, ACAS, AIA, FSA, a Clinical Professor of Finance at New York University, were the first in the World to research the Cost to Society of Lyme disease. The results were published in Contingencies (Journal of the Society of Actuaries). She has presented updates to this in posters at various scientific programs.

Karen is the Co-Producer of two award-winning TV programs: 1. Faces of Lyme Disease, which aired on Lifetime TV network. Faces won Top honors in Educational Excellence at the RX Club’s International Competition; Outstanding Achievement (silver) in the Global’s International Healthcare Competition; and 4th place at the New York Film Festival’s TV Healthcare Education. 2. Dr. Ticked-off, a CDC-funded and approved bilingual, open-captioned for the hearing impaired, kid’s educational series which were hosted by Emilio Delgado (“Luis”) from Sesame Street with puppets and trained puppet wranglers from the University of Connecticut School of Puppetry. This program was broadcast nationwide on PBS stations. This received a Silver award in 1994 from the International Communications Film & Video Festival in Children’s Education.

Dr. McBride, who had joined the LD’s Board, cohosted an LDF scientific conference in Stamford. Ct. to educate the medical community about LD. Here, Karen invented the concept of a free “Public Forum” where the conference presenters would present a panel for the public and summarize their talks and take questions from the public. This was a very useful concept to help educate residents and advocates.

Karen’s mentors have been Board members Dr. Willy Burgdorfer, Dr. James Miller, David Kazarian, RPh, and Julie Rawlings, MPH. They have helped guide the LDF, Inc. to the highest level of scientific credibility.

Karen Nominating Sen Lieberman

Senator Joseph Lieberman surprised Karen when he asked her to nominate him for re-election as the Democratic Party’s candidate to the U.S. Senate. Usually that honor goes to a rich/influential donor. However, the Senator wanted to honor someone who worked with him and represented a cause dear to his heart. Karen’s work with the Senator to obtain the first funds (millions of dollars) for HHS for tick-related activities, co-create “Lyme Awareness” day/week/month, cohost the yearly “Wake-Up Washington” DC rallies, and cochair the LDF Congressional Kids’ Poster Campaign all showed their long-term commitment to improving public health.

Senator Ted Kennedy, former Chairman of the Senate Committee on Health, Education, Labor & Pensions called Karen and asked for her help in coordinating a hearing on LD. Karen worked with the Senator’s team until the hearing on August 5, 1993. Karen testified. Karen was pregnant with her daughter and shortly after the hearing, she was admitted to a hospital in pre-term labor. Karen stayed there until December, when she gave birth to Christy a healthy daughter.

Karen Enjoying Outdoors

Karen and her family love being active in the outdoors and follow the “Protect and Check” routine.
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