Bethany Toughill was only six weeks old when her mother noticed a rash on her scalp. After weeks of futile medical treatments and suffering, the rash had progressed, skin lesions covered Bethany’s body and x-rays revealed several bone lesions. Through a skin biopsy it was discovered that she had a rare and potentially fatal blood disease. It was at that moment that Bethany's parents, Sally and Jeff, were first introduced to the term histiocytosis.
Uninformed and afraid, the Toughills searched for answers only to find there was very little information available and no existing support group. Thus began a personal crusade to reach out to the patient and medical communities fighting histiocytic disorders. In just one year’s time, the Toughills made contact with more than 40 families living with histiocytosis, and connected with a physician who had been studying the disease for ten years. The Toughills were determined to establish an ongoing support network, so that no other patient or family facing histiocytosis would ever have to feel as alone as they had upon receiving Bethany’s diagnosis.
In August of 1986, the Toughills published their first newsletter addressing the issues faced by patients and families affected by histiocytic disorders, and they mailed it to their newly created network. By October of 1986, the Histiocytosis Association was incorporated as a nonprofit agency by the State of New Jersey, and in May of 1988, acquired 501(c)(3) status.
Since then, the Histiocytosis Association has continued to grow in membership, programs and knowledge. What began as a kitchen table operation is now a global organization with approximately 7,000 members. It is the central hub for information and support, a bridge between the medical and patient communities, and the largest financial supporter of research into histiocytic disorders in the world.
The Histiocytosis Association is supported entirely through gifts from corporations, foundations and individual donors to fund its education and support programs, and its critical research program. This research has led to significant breakthroughs, including the identification of the various different forms of the disease, and the introduction of revolutionary protocols to treat patients with Langerhans cell histiocytosis and hemophagocytic lymphohistiocytosis. Research continues into pinpointing the cause of these mysterious diseases, the development of more effective treatments, and ultimately, the discovery of a cure.
Jeff Toughill continues to lead the Association as its president, personally ensuring that no one battling these rare diseases ever feels alone. And Bethany continues to do exceptionally well.