Questions & Answers -- Histio Heroes Research Fund

We have received questions from a number of histio parents about the Histio Heroes Research Fund (HHRF) and wanted share our response to a recent set of questions which hopefully will provide more information about HHRF, its structure, its goal and future plans.

What is the history behind this fund? What I mean is, how did it start or what was the impetus behind it?

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

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.

The initial grant for the research that HHRF is now supporting at Texas Children's came from a grant that Dr. McClain and Dr. Allen received from the HAA Research Program. The research funding from this program is awarded through 1-2 year grants for which individual researchers must apply and which are limited to $50,000 per year. Dr. McClain has stated that he requires additional funding to allow progress to continue on his research. HHRF hopes to solve these problems by being able to direct money to this research without the time or dollar amount limitations.

Is it governed by a Board of Directors?

HHRF is a restricted and designated fund at Texas Children's Cancer Center (TCCC) which means that funds can only be distributed to the TCCC Histiocytosis Program and, in particular, the research portion of that program under the supervision of Dr. McClain and Dr. Allen. Future plans include HHRF being established as an independent non-profit which will be able to fund worthwhile research at other institutions. However, the current focus is the research being preformed by Dr. McClain and Dr. Allen through the TCCC Histiocytosis Research Program

HHRF has established a Parental Advisory Board compromised of histio parents with experience in fundraising and operating non-profits to act as a liason between histio families and the TCCC Histiocytosis Program in organizing fundraising events, processing donations and communicating information about distributions from HHRF to the TCCC Histiocytosis Research Program.

The HHRF Parental Advisory Board also is charged with ensuring that funding requests from and distributions to the TCCC Histiocytosis Research Program meet with areas of need identified in the business plan and fall within the parameters set forth in the annual program budget. Information about funding requests and distributions from HHRF to the TCCC Histiocytosis Research Program will be communicated to donors and supporters on a regular basis.

How does it award grants and what are the granting criteria that must be met, such as does it pay physician salaries, cover overhead costs, etc.?

Dr. McClain and Dr. Allen have developed a five year plan for accelerating the progress of LCH research, which includes a business plan (setting forth major research goals) and proposed operating budget (FY10-FY15) for the TCCC Histiocytosis Research Program that identifies projected operating expenses, including laboratory operating expenses. HHRF will focus initially on raising money to cover these expenses on an annual basis ($150K - $200K) in keeping with its goal of 100% of moneys raised or donated being allocated to research efforts. Funding being allocated to cover personnel expenses (including recruitment of additional researchers) will only occur after annual laboratory operating expenses have been fully satisfied.

Does the board that governs the fund also hold the grantees accountable?

HHRF will ensure financial accountability through regularly audited financials detailing how the money distributed from HHRF to to TCCC Histiocytosis Research Program is being utilized with a breakdown by category of expenditure. Funding also will be conditioned on activity being documented that shows progress toward identified research goals.

How is the research reported and shared with others doing research into histiocytic disorders?

HHRF has made clear that status reports on the research being funded will be required on an annual basis with the idea that one or more articles detailing research results will be published in peer-reviewed journals and presented at medical conferences.

Please feel free to contact us if you have any other questions or want more info about how to become involved with the Histio Heroes Research Fund (HHRF).

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