Bethany Toughill was six weeks old when her mother noticed a skin lesion on her head. The lesions covered her body after weeks of futile treatment and suffering. Increasingly concerned, Bethany's physician performed a skin biopsy. It was at that time that Bethany's parents, Sally and Jeff, were first introduced to the term histiocytosis. The Toughills sought out other families dealing with the disease and within a year's time they were contacted by more than forty families, as well as one doctor who had been studying histiocytosis for 10 years. Their goal was to form a support group of families so that no one would feel alone, as they had. In August of 1986, the first newsletter about histiocytosis relating to the problems patients and their families face was mailed to those who had contacted the Toughills. In October of that same year the Histiocytosis Association of America acquired its 501(c)3 from the Internal Revenue Service and was incorporated as a non-profit agency by the State of New Jersey. Since that time the Association has continued to grow in its membership, programs and knowledge. To date, the Association has more than 5,000 members who are spread across the world and the Association can claim to be the largest financial supporter of research into the histiocytic disorders. This research has led to breakthroughs including defining the number of different forms of histiocytoses and a revolutionary protocol for treatment of Langerhans cell histiocytosis patients. The Histiocytosis Association of America can only continue its work with the help of donations from corporations, foundations and private donors. The Histiocytosis Association of America strives to serve its members through education and emotional support. Thus, the Association has created and maintained a variety of programs geared toward this aim. The Histiocytosis Association of America has also established a research program to fund projects looking for the cause of this mysterious disease, better treatments, and ultimately a cure. |