Dear Friends:

I would like to use this space more often to share information with you about some of the continuing efforts of your Association. It has been a very busy and exciting few months as we reach out to families and patients and work hard to find a cure for these diseases. 

Beth Anne Miller, our Chief Operating Officer, and Kristen Demski, our Special Events Coordinator, participated in the annual mid-year Board meeting of the Histiocyte Society. A portion of the meeting was dedicated to the ongoing planning and organization of the Society’s annual meeting in Berlin, Germany this September. Research benefiting the adult patient population is high priority at the upcoming meeting in Berlin. An entire day of the three-day annual meeting will be dedicated to adults with any of the histiocytoses. 

Here is a little fact for you – in the past 30 days the Association was contacted by 25 newly diagnosed adult patients. For the same period we were contacted by 28 families who have a newly diagnosed child. 

The HAA was responsible for organizing several international meetings concerning the new LCH IV treatment protocol and on-line data base. The new system will enable physicians from around the world to directly enroll patients in LCH IV as well as other forthcoming new treatment protocols. The goal is to register more patients in an efficient manner and shorten the time needed to learn important new information about various treatments.  The planning and organization are on schedule with an anticipated opening date of about January 2009. This five-year international effort is primarily funded by the HAA with the help of three very generous donors.

Recently, Beth Anne Miller and I attended a meeting of the International Consortium of Rare Disorders in Washington, DC. This unique meeting gave us the opportunity to meet and lobby representatives from the National Institutes of Health. We feel encouraged that the NIH has become more aware of the histiocytic disorders and we intend to continue to develop this relationship in an effort to encourage government research.

Recently, two volunteers from the Cincinnati area accompanied me to the annual meeting of the American Society of Pediatric Hematology/Oncology where we spread the word about the histiocytoses. The meeting was attended by over 500 physicians and we were able to hand out the various treatment protocols, Histiocyte Society membership information, and brochures for physicians to give to patients.

We are currently preparing a patient’s brochure about Erdheim Chester disease and have just installed a new video on CNS involvement in LCH. A new feature will be installed on our web site in the near future, entitled “Most Commonly Asked Questions”.

Be sure to check out our events page. There are lots and lots of fantastic events that you may want to attend. In addition to raising community awareness these events offer you the opportunity to meet other patients and families. Also, don’t forget our upcoming California regional meeting on June 21^st!

You can be very proud of what our Association is accomplishing. YOU have made it possible!

Thank you

Sincerely,

Jeffrey M. Toughill
President
Histiocytosis Association of America