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.
