Organizational History

35 Years Strong

At the end of 2019, our Founder of 35 years, Jeffrey Toughill announced his retirement and began the transition to a new Executive Director who would be committed to our cause, passionate about people, and understanding of the unique needs of a global nonprofit organization.  

Jeffrey Toughill, has been a backbone to the Histio Community since 1986; spearheading a global organization that supports. histiocytosis patients and families by providing a safe space, listening ear, education, community, and help in finding the right medical team. Jeff is a community treasure who embodies the mission of the Histiocytosis Association:  embracing a vision of a world free of histiocytic disorders. 

After an extensive nationwide search, the Board of Trustees found someone who we are confident will be an exceptional leader for the Histiocytosis Association and the Histio Community for many years to come. 

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. She brings over 7+ years of global business and talent development experience, is a passionate leader focused on supporting community and research alike and has a steadfast dedication to finding a cure for all histiocytic disorders. 

As the Association looks to the future, Deanna has a strong vision and commitment to continuing the fight for a cure: 

“The Histiocytosis Association is a beacon of hope for so many families around the world, including my own. Over the last 35 years, under the leadership of founder Jeffrey Toughill, the Association has realized tremendous strides in treatment protocols and research advances, and has become a leading resource for education, awareness, and support for our global community. Our vision for the future, is to not only continue to support those whose lives have been affected by histiocytic disorders, but ultimately, to realize a cure. I am honored to have the opportunity to dedicate my life’s work to supporting the Association’s mission and the families of the Histio Community.” 

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 35 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.