Organizational History

39 Years Strong

In 1986, Jeffrey Toughill, spearheaded a global organization that supports the histiocytosis community. He supported histio patients and families by providing a safe space, listening ear, education, community, and help in finding the right medical team.

Our former Executive Director Deanna Fournier was diagnosed with Langerhans cell histiocytosis (LCH) at the age of 6 and has been in remission for over 20 years. Deanna has been involved in the Histiocytosis Association since the age of 7, helping to launch a Pen Pal club to connect patients and families worldwide, volunteering for various events and fundraisers, and most recently serving on the Board of Trustees as Secretary. For five years she was a passionate leader focused on supporting community and research alike and has a steadfast dedication to finding a cure for all histiocytic disorders. Even after she's stepping down, she has committed herself to staying involved with the community as a volunteer.

Together as a community, we’ve taken the idea of two determined parents, Jeff and Sally Toughill, who began their work at a small kitchen table in Pitman, New Jersey and have grown it into a globally recognized nonprofit organization that has been truly making a difference for over 39 years. Their daughter, Bethany, was diagnosed with LCH as a baby but is now a thriving adult with a family of her own.  Just like Bethany’s story, there is an incredible future still ahead - one full of promise and hope for a cure! 

jeffbethany
Jeff & Bethany
2019
bethany
Bethany
1982

Where It All Began

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.

Jeff and Sally Toughill were interviewed about their family's fight against histio by Family Circle Magazine in 1987, not long after establishing the Histiocytosis Association. Read the full article and view photos from where the roots of the Association began.