Heartfelt Histio Update
June marked the close of our Scholarship Program application window, and the start of the application window for the Histiocytosis Association Research Program. In my time on the Board of Trustees, I had learned a lot about both programs; the Research Program had been in operation for many years while the Scholarship Program was relatively new. Both had and continue to have major impact on the community and the advancements in the knowledge of histiocytic disorders. Due to the fact that the Research Program is more science focused and is for researchers and clinicians, I thought it would be fun to give that program a little space on the blog for us all to learn a bit more about together!
Since 1990, the Histiocytosis Association has launched its Annual Research Program specifically for funding grants for laboratory research, financially supporting clinical trials, and managing and participating in the evolution of the Histiocyte Society. The funding the Association offers 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.
The Histiocytosis Association Research Program has funded over $7 million in research grants, which equates to 190 grants awarded to researchers. The average amount of our grants are $50,000, however that amount has varied in the past. The reason for the $50,000 award amount is due to a decision made by the HA’s Board of Trustees Scientific Committee, with guidance from our Medical and Scientific Advisory Committee who do not participate in any HA activities or as a member of our board but rather as an external advising body. The decision was made to fund smaller grants to support more investigators to begin exploratory studies and to motivate many individuals to gain interest in the field which could lead to multiple new avenues of research.
Through the Association’s Seed Grant Funding, some incredible progress has been made:
In 2012, Dr. Barret Rollins MD, PhD of Dana-Farber Cancer Institute and Astrid G.S. van Halteren PhD of Leiden University Medical Center successfully showed that the majority of Langerhans cell histiocytosis (LCH) cases have an alteration in a gene called BRAF that demonstrated treatment of LCH with a BRAF inhibitor produces clinical responses
Dr. Cheryl Willman’s study that showed that LCH is a neoplastic process rather than a reactive disorder
LCH-I, LCH-II, LCH-III and LCH-V studies, designed to provide a framework for better treatment and increased survival for LCH patients, and allowed for the maintenance of centralized data centers in Europe and the US
HLH-94 clinical trial dramatically increased survival rates to nearly 50%, and HLH-2004 clinical trial continued this important research for patient outcomes
Histiocyte Society International Rare Histiocytic Disorders Registry in partnership with Sick Children’s Hospital in Toronto; for JXG, RDD, ECD, and other rare histiocytic disorders
If you are interested in learning more about the grants we have funded over the years, and to see the impact of your support, I encourage you to explore the website! https://histio.org/research/grants-awarded/
Stay safe, and be well!