An orphan disease is defined as a disease which has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat and prevent it.

According to The National Cancer Institute (NCI) in 2010, 2.16 billion dollars was spent on cancer research. Of that, 3-4% was budgeted for pediatric cancer research with less than 8% of that total specifically targeted to pediatric brain tumors—which equates to approximately 6 million dollars. The lack of financial support from the NCI is why it is of vital importance for our Foundation to support research into the causes and treatments of pediatric brain tumors. In 2010, The Rory David Deutsch Foundation’s grants totaled $600,000. This amounts to approximately 10% of all the dollars designated for pediatric brain tumor research. While that figure is significant, it only serves as a statistic in defining The Rory David Deutsch Foundation. It is all of your passion, spirit and generosity illustrated throughout the pages of this newsletter that demonstrate your unending devotion. That is what truly characterizes this Foundation.

We thank you for being a part of our Foundation, our team, and for “adopting” this cause and continuing the fight to eradicate this “orphan disease”.

“If a seven year old can change the way the world sees pediatric brain tumors, imagine what we can do together”




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