UPDATED 4 March 2014

We are extremely pleased to announce that the Ethan Jostad Foundation has generously pledged $2,500 to the Focus On Rhabdo Bio-Specimen Donation Initiative, bringing our funding balance up to $10,000.

3 March 2014

Focus on Rhabdo is very happy to announce that we have kickstarted two very important initiatives: a Foundation Consortium and Funding for our Bio-Specimen Donation Program.

Funding for Focus On Rhabdo Bio-Specimen Donation Initiative

Through generosity of three members of our new Foundation Consortium, the Patrick M. Callahan Memorial Fund, Inc., Live Like Bella Foundation for Childhood Cancer, and the Thumbs Up For Lane Goodwin Childhood Cancer Foundation we have $7,500 pledged to kickstart and fund the our new Bio-Specimen Donation Initiative.

Laboratories receiving rhabdomyosarcoma bio-specimens through our initiative will receive a $1,000 grant to help with the expenses of developing patient derived xenograph models of the tumor and sharing them with other labs as outlined in our Memorandum of Understanding. An additional $250 is available to cover the expenses of getting the tissue specimen to the lab.

What Is A Foundation Consortium?

Focus on Rhabdo is not a foundation, nor does it plan to be one. There are over 150 'small' foundations (many of them memorial foundations) dedicated to one or more aspect of rhabdomyosarcoma. There is scant need for another.

Many of these foundations raise relatively small amounts of money (when judged against the cost of research projects) and may be frustrated by believing that their donations make too small a difference in the expensive world of medical research. The concept of a Foundation Consortium is two-fold:

  • A repository for funds raised by Focus on Rhabdo to fund research projects – as mentioned, Focus on Rhabdo is not a foundation and therefore cannot collect or dispense funds, yet we are often asked how people can donate to rhabdo research. By directing donors to a number of foundations, they have a choice in where they make their donations. These funds are dedicated to Focus on Rhabdo projects and need to be released upon request of the Focus on Rhabdo Executive Committee.
  • To join a number of ‘smaller’ foundations together so that “many smalls make a big” difference for funding rhabdo research. By aggregating the distributions of a number of smaller foundations, research projects that otherwise couldn’t be funded can receive the funding they need.
    All requests for funding must be approved by both the Scientific Advisory Board as well as the Executive Committee of the Advocacy Steering Group, thus assuring a thorough review and that funds are used for appropriate and recognized research projects.

Why Be A ‘Member’ of the Foundation Consortium?

Simply, to make a difference in the future for those with, and those who may, in the future, be diagnosed with rhabdomyosarcoma. Small donations can make a big difference when they are joined together.

Member foundations are encouraged to choose a Focus on Rhabdo project that they wish to help fund. A link will be placed on a donations page on the Focus On Rhabdo website (http://focusonrhabdo.org) so that potential donors can choose not only the foundation they wish to contribute to, but the project they wish to help fund.

For additional information about the Foundation Consortium or the funding for the Bio-Specimen Donation Program, please contact me.

Thank you all for your dedication to making rhabdo a universally survivable disease.

Alan Ehrlich