Monday, January 4, 2010

Histio Heroes Research Fund -- Press Release and Mission Statement

The Histio Heroes Research Fund (HHRF) has been established to contribute to the goal of curing histiocytosis. We share this goal with the Histiocytosis Association of America (HAA) which has and will continue to be the primary resource for advocacy, education and outreach for histio families. Over the past two decades and with help from countless histio families, the HAA has accomplished a great deal through its support of research programs and treatment protocols pursued by researchers and physicians, including Dr. Ken McClain.

It is our belief, as families dealing with histiocytosis, that the more directions taken to understanding histiocytosis the faster answers may come. HHRF is intended to accelerate and advance the progress of histiocytosis research by raising money from new events and new sources that can be channeled directly to research that is showing promise and that may require more significant funding than is currently available from traditional funding sources.

It is in that spirit we have created HHRF to support the Histiocytosis Program at the Texas Children's Cancer Center and, in particular, the research that Dr. McClain and Dr. Carl Allen are performing. This research has determined that Langerhans Cell Histiocytosis (LCH) is not caused by a skin cell (Langerhans Cell) as commonly thought and instead more likely results from a circulating white blood cell (myeloid dendritic cell). This discovery holds substantial promise for identifying the genes that cause LCH and developing new treatment strategies targeting these genes.

Click HERE to learn more about the TCCC Histiocytosis Program, its research and its goals over the next five years.

HHRF believes that this research deserves the financial support which will enable continued progress to be made towards better understanding and treating a disease which has not been well understood. However, this support does not mean that histio families should no longer continue to support the efforts of HAA. In fact, the HHRF Parental Advisory Board is comprised of families who have supported the HAA through organizing regional and national meetings, developing informational and educational videos, and hosting major annual fundraising events, including Histio Heroes 5K and Hike for A Cure.

Please contact one of us if you have questions about HHRF or would like to get involved.

We all understand that research takes time and money and that for any problem there is more than one approach to finding a solutions. We believe that HAA and HHRF can both contribute to faster diagnosis, better treatment and improved understanding of histiocytosis in their own way with the same goal.

That goal is to accelerate us to a cure.

The HHRF Parental Advisory Board

Betsi Burns
Bridget & Patrick Colby
Mike Golding
Toby & Billi Jo Hausman
Darci Moon
Donna & Don Johnson
Pam & Tom Sanger
Melissa & Jeff Thompson
Colleen McPeek & Ron Bechtold

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