The Road To A Cure
At the very heart of the Histiocytosis Association is the steadfast commitment to finding a cure for histiocytic disorders. The Histiocytosis Association Research Program was established in 1990 by the Association’s Board of Trustees with the objective of identifying and funding the most important and promising research initiatives – those that will lead to more effective treatments and, ultimately, a cure.
The Histiocytosis Association Research Program operates very much on a “parallel highway” – funding grants for laboratory research, financially supporting clinical trials, and managing and participating in the evolution of the Histiocyte Society. All of these functions make research possible. It is a concept known as “bench to bedside” – translating research at the “bench” in the laboratory into clinical trials, or at the “bedside.” The Association is extremely proud to be leading the search for a cure while ensuring that patients are being treated today.
Funding is focused on two types of scientific research – basic and clinical. Basic scientific research focuses on understanding the function of cells and the disease process, and is generally conducted in a laboratory under controlled settings. Clinical scientific research utilizes the knowledge generated through basic research and applies it directly to the treatment of patients through clinical trials. These two forms of research complement one another, and both are necessary in the quest for better treatments and, ultimately, a cure for histiocytic disorders.
The Histiocytosis Association is committed and focused on a threefold research plan and philosophy:
1. Competitive Peer-Reviewed Grant Process
2. Clinical Studies
3. Secretariat for the Histiocyte Society
- The Association funds the very best basic science research being conducted worldwide. It is identified through a competitive, peer-review process modeled after that of the National Institutes of Health; the results of this funding continue to pave the path to a cure.
- The Association funds clinical studies that result in identifying the best possible treatments for histiocytic disorders. This provides immediate aid to patients battling these diseases.
- The Association directly facilitates research by managing the only professional medical organization specifically dedicated to the research and treatment of histiocytic disorders, the Histiocyte Society. This unique relationship provides the Histiocytosis Association with unparalleled access to the latest advancements and information in the histio scientific community, from which all histio patients can benefit.
Research To Date
Engaging in these three types of research efforts simultaneously provides a comprehensive, 360-degree approach to finding the best treatments and, ultimately, a cure for all histiocytic disorders.
The Histiocytosis Association is committed to funding research programs to understand and to find cures for the histiocytoses. All research programs that we fund are required to meet all federal guidelines for research and ethical standards at the institutional, foundation and government levels. All studies supported by the Histiocytosis Association that involve patient material are required to have approval from the relevant ethical board prior to receiving any funding.
In 1992, two years after the program was formed, the Association presented its first ten grant awards in the amount of $10,000 each.
Since 1992, the Histiocytosis Association has provided...
Grant amounts now average $50,000 per project but have been awarded in amounts up to $100,000 in the past. The Histiocytosis Association of Canada (HAC) has provided $265,000 of that funding. This considerable, sustained financial commitment by the HAC is a testament to the internationally recognized success and quality of the Association’s Research Program.
The Founder's Grant & Toughill Prize
Beginning in 2021, a new research grant award and financial prize was established to honor the lifetime achievements of Jeffrey Toughill, the Histiocytosis Association's Founder and long-time President. Jeff's passion for supporting the most groundbreaking research and vital scientific initiatives for over 30 years has had a major impact on the improvement of disease knowledge, diagnosis methods and treatments. This award will be awarded to projects that embody these same characteristics.
The Founder's Grant and Toughill Prize will be awarded to the research applicant whose research application ranks the highest in our grading and review process. The Founder's Grant will be up to $50,000 of seed funding. An additional $1,000 Toughill Prize will be awarded to encourage the applicant to attend scientific and educational conferences such as the Histiocyte Society Annual Meeting.
For more than 35 years, the Histiocytosis Association has served as a partner, Secretariat and the primary source of funding for the Histiocyte Society. The Association’s support of the Society includes:
- Facilitating and participating in strategic planning initiatives,
- Aiding in the development of organizational guidelines and operating procedures,
- Managing the overall organizational, administrative and financial operations,
- Developing, producing and distributing publications like the Society annual newsletter and membership directory;
- Building, developing and maintaining the organization and annual meeting websites;
- Facilitating communication between Society members and the Executive Board, and
- Organizing and managing the Society’s annual scientific and Executive Board meetings.
Conducting these activities alleviates the Society’s leadership of the administrative duties associated with running a volunteer-based, nonprofit organization and allows them to focus solely on research and treatment.
Medical & Scientific Education
The Association continues its efforts to support scientific endeavors by promoting, attending and sponsoring medical education initiatives and meetings. Through a formal funding agreement, the Association ensures that recipients of grant awards share research findings with the medical community by publishing their work in professional journals. The goal of these efforts is to make the medical community more aware of current information regarding the diagnosis, treatment and research of histiocytic disorders and to recruit new physicians to join the search for a cure.