Tuesday, March 8, 2011

How the Histiocytosis Association of America supports JXG research by Jeff Toughill

It is so wonderful to see how this special group has come together in support of JXG patients. A BIG thank you to Maria Jose Diaz Frias for making this happen. As a parent of a child with Langerhans cell histiocytosis and the Founder and President of the Histiocytosis Association I am well aware of how hard this is to accomplish. In my case, it was the support of friends and family that helped give birth to our Association. I can see that Maria has had the same experience. I would like to take this opportunity to tell you about the Histiocytosis Association and what we are doing to find better treatments and a cure for JXG. As you may know, the histiocytoses are a group of disorders that are related to each other. Langerhans cell histiocytosis (LCH) is the most prevalent and the other forms; JXG, hemophagocytic lymphohistiocytosis (HLH), rosai dorfman (RD) and Erdheim Chester (ECD) are considered to be even rarer. Even though they may have different names physicians and scientists have found that there is similarity in the way these diseases affect patients and the problem cells involved. The Histiocytosis Association (www.histio.org) is funding scientific work that we anticipate will lead to cures for all these related diseases. Even though a scientist is studying cells in Langerhans cell histiocytosis what he or she learns can possibly be related to JXG, ECD, HLH or RD.
Like the National Institutes of Health the Association’s Board of Trustees understands that “revolutionary ideas often come from unexpected directions”. Once a year, the Association sends out an announcement to physicians and scientists around the world asking them to submit their best work to the Association. We list a variety of interests in the announcement and specifically include JXG. After all the applications are received they are reviewed and scored by the Histiocyte Society’s Scientific Committee. The grants then receive a second review and scoring by the scientific members of the Association’s Board of Trustees. This competitive process ensures that we are funding the best research with the best possibility of increasing knowledge.
In addition to funding grant awards we have been very successful in ensuring that the Histiocyte Society includes all of the rarer histiocytic disorders, including JXG in their studies. I have been very active when communicating with the Society that even though some of these diseases are even rarer we must find a cure for ALL of them. The Histiocyte Society is an international group of over 200 physicians and scientists from around the world who are studying these disorders. We have been working with the Histiocyte Society to establish a Rarer Histiocytic Disorders Registry that will collect data on patients with JXG, RD, ECD and, adult LCH. The Association has funded the start-up costs however the it will take several months for the registry to become active. We still need to work out how to cover the on-going costs and comply with the legal requirements of other countries. I want to ensure all JXG patients that the Association is working very hard to find better treatments and a cure for JXG. This site will be an important vehicle for the Association to share information with all of you. If you haven’t already, please feel free to join the Association so that we can keep you informed about our activities. It’s also important to raise funds for research. As a rare disease it is only through the work of families and friends that research can be funded.
Thank you for this opportunity to tell you how the Association is working for you.

Jeffrey M. Toughill
President of the Histiocytosis Association of America