Funding the Cure - June 2007
Dear Friends:
We have just funded our 110th research project! What an amazing story of how all of you have made this possible.
We all want to find better treatments and a cure and I want you to know that we have made significant scientific progress. No, we don't have the cure but, we do have better treatments and we have made a difference in the lives of many of our children. Importantly, physicians and scientists have learned even more and everyday we move closer to our goal of a cure. In thinking about all this I thought I would share our research funding philosophy with all of you. I am not to shy to say that it is a formula for success.
Why is research our responsibility? A rare disease is defined as a condition affecting fewer then 200,000 patients in the United States. The diseases that our Association represents account for about 400 new cases each year. We are just one of an estimated 6,000 rare disorders that have been identified so far.
In general, rare disorders do NOT have a high enough priority to become eligible for federal research funding even though the pain and suffering of a patient can be just as severe as a patient with a more prevalent disease such as cancer or leukemia.
The Histiocytosis Association of America is the primary source of funding into the histiocytic disorders. To date, the Association has funded 110 research projects at an average cost of $40,000 each.
How do we decide which physicians receive research grants? Our goal is to find better treatments and a cure as quickly as possible. The Association is responsible for ensuring that your research donations are used in a responsible way. We are committed to funding only the highest quality grants identified through a competitive review process. Only the best are funded regardless of where they are located in the world!
We do not award research funds based upon anyone's personal allegiance to their child's doctor or the institution at which their child was treated. That is not the way to ensure the best research or make the best use of funds. We do encourage you to tell your physician about the Association's program so that if they choose to submit a grant application their work can be considered in the review process.
Where do research funds come from? Since the federal government does not generally fund research, the only source of research funding is through our members and their friends and families. Many members have held fund raising events or helped us identify corporations who will support our cause.
What can you do?
With your help we can maintain the research initiative. Let's do as much as we can so that the children with these diseases have hope for a cure. Please. . . . just imagine. . . . a cure.
Sincerely,
Jeffrey M. Toughill President Histiocytosis Association of America |