Increase awareness and raise funds to support histiocytosis research

The Histio Heroes Research Fund has been created by a group of histio families from across the country to help raise funds that will support Dr. Ken McClain and Dr. Carl Allen in pursuing important and ground-breaking research into histiocytic disorders through the Histiocytosis Research Program at Texas Childrens' Cancer Center.

The Histiocytosis Program at the Texas Children's Cancer Center, is associated with Texas Children's Hospital, the largest pediatric hospital in the United States. The Histiocytosis Program Director, Kenneth L. McClain, M.D. Ph.D., is the past president of the Histiocyte Society and has been treating patients with histiocytic disorders for over twenty years. He sees over 100 new LCH and HLH patients per year, and has over 400 active patients in the clinic. Dr. McClain is one of only a few physicians in the world researching a cure for children with histiocytosis.

The Histiocytosis Research Laboratory, through the dramatic increase in the number of patients, has been able to develop and expand clinical trials of innovative therapies and leads the world in research of LCH, HLH, JXG, RDD, and ECD. The clinical experience developed, coupled with the basic research studies involving with rare biopsy and other tissue samples, provides the unique opportunity to establish clinical and biologic correlations that no other center in the world can.

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.

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. HHRF will accept direct fund raising donations, organize fundraising events across the country to raise research funds and promote awareness about histiocytosis. 100% of monies raised or donated to will be used to fund research.

HHRF will also inform families about additional ways to support this research which will not require financial donations, including increasing physician awareness about histiocytosis and securing tissue biopsy samples from their hem/onc physicians to send to Dr. McClain for his research. These tissue samples provide vital information that will assist Dr. McClain and his team in understanding the basic causes of histiocytosis which hopefully will lead to more effective treatments.

Fundraising events will begin in early 2010, including a scotch and wine tasting event being held in a number of cities and a program to help histio while getting your taxes done. We also are working on a number of other events that will be announced in the near future.

You can help now by making a donation (no amount is too small) during the holiday season to The Histio Heroes Research Fund by going to the TXCCC Histiocytosis Program page - http://www.txccc.org/content.cfm?content_id=928.

Click the DONATE link at the bottom of the page which will take you to the on-line donation page. Make sure to include "The Histio Heroes Research Fund" or "TXCCC Histiocytosis Program" in the Purpose of Donation/Comments section.

We also encourage any interested families to share their fundraising ideas or offer to organize their own unique event. The histio community is filled with amazing people who hopefully will be willing to contribute their energy, knowledge and talents to this effort.

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