In my last letter, I wrote that in the past 30 days the Association was contacted by 25 newly diagnosed adult patients. In the same period we were contacted by 28 families who have a newly diagnosed child. Many of you have expressed surprise about the number of newly diagnosed patients – both adult and pediatric. The HAA has worked very hard to raise awareness about these diseases among both physicians and the general public. If you have ever held some type of event or had a story about your experiences appear on TV or in print that also serves to reach out to newly diagnosed patients and families. 

Together the HAA and our membership are raising awareness and making it easier for patients and families to find us. The number of contacts from families who have a child with one of these diseases has remained fairly consistent over the years. The number of adult patient contacts is really a “catching up” of all those adult patients who are now better able to be identified and find us through the internet. It appears that there is not an increase in the numbers of patients with these diseases but rather a vast improvement in the diagnosis and willingness of physicians to let their patients know about the HAA.

Erdheim Chester Disease/Online video presentations
We are currently preparing a patient’s brochure about Erdheim Chester disease. We also have just installed a new video on CNS involvement in LCH on our web site.

Rockefeller Plaza Awareness Project
We have been given a fantastic opportunity to place a display in a window looking out onto Rockefeller Plaza, New York City. Thousands of people pass by this window every day.  It is located across the plaza from the Today Show. Many of their interviews and morning concerts take place in front of this window. The Today Show is a morning news/entertainment show on NBC. View the Press Release.

National Conference on Histiocytic Disorders: 2009 – Milwaukee
Members have been asking us when we are having another national meeting, similar to the 2007 National Conference in Florida. Thanks to the generous support of a Wisconsin family, we are now able to begin organizing the 2009 meeting. Tentatively, the meeting will take place on August 1 and 2, 2009. We expect local experts from Milwaukee Children’s to join with an outstanding, international team of doctors from the Histiocyte Society to present all the latest information about the histiocytic disorders. Those of you who attended our National Conference in Florida can attest to how valuable the 2007 Conference was. Put this one on your calendar!

National Heart Lung Blood Institute
Beth Anne and I attended a two-day conference of the NHLBI, an affiliate of the National Institutes of Health, in Bethesda, MD. The goal of the conference was to pull rare disease groups together with the NHLBI to identify ways to collaborate. During the meeting we were able to identify and meet some of the program directors. This is an ongoing opportunity for us to forge better understanding of these diseases within the NHLBI and enlist the aid of their investigators to better understand the basic science about the cells involved in these diseases.

Office of Rare Disorders
A stop at the Office of Rare Diseases (ORD) at the National Institutes of Health afforded us the opportunity to meet the Director, Dr. Stephen Groft. Along with other ORD staff members Dr. Groft engaged us in a 2 hour chat about the HAA, the Histiocyte Society and the work that we were doing. His staff was most helpful in suggesting ways that we could involve the various Institutes in the study of these diseases.  He also encouraged us to submit an application for a grant in support of the future Histiocyte Society meeting in Boston (2010).

Dr. Groft and his colleagues wanted to make sure that we were aware of the recent announcement concerning the Rare Disease Consortia Grant opportunity. They are looking to fund the work of a multi-national consortium of medical institutions if they have a close working relationship with a lay organization. In talking with Dr. Groft, our Association’s relationship with a variety of medical institutions around the US and the world make us a great candidate for the grant opportunity.

Strategic Planning
The HAA Board of Trustees has begun the process of creating a comprehensive strategic plan for the HAA’s future. It is imperative that we know what is important to accomplish over the next few years and how we will work together to raise the funds needed to attain those goals. We need to develop a plan to get where we are going and . . . know when we have arrived.

At some point in the process we will be seeking your input about some of the decisions we need to make. Make sure you keep any eye out on our web site for news about this.

Fund Raising
As of today, we are working on twenty individual fund raising events, all of which are taking place before the end of this October.  Events accomplish two important goals – they raise public awareness about the histiocytic disorders and how we have to fight so hard for progress and – they raise funds for important research. Interested in making a BIG difference by doing an event? Just contact Kristen Demski at the Association’s offices.

Sincerely,

Jeffrey M. Toughill
President
Histiocytosis Association of America