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 Fiscal Year (FY) 2020 NCI was appropriated $6.44 billion and the projected spending on childhood cancers for FY 2020 is $596 million. 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.

Twenty-one years ago, after Rory passed away, we decided to start a foundation.   We were then asked if the goals of this foundation would be to support research or honor Rory’s memory. Our answer was yes to both aspects as they are mutually exclusive. The focus of The Rory David Deutsch Foundation is to raise funds for research in pediatric brain tumors and have a lasting legacy for Rory.  Research has come a long way under the direction of Dr. David Ashley and Dr. Oren Becher. We were a significant component part in the securing of Dr. David Ashley, the Director of the Preston Robert Tisch Brain Tumor Center at Duke University.   As of this summer he is known as Dr. David Ashley, The Rory David Deustch Professor of Neuro-Oncology. To repeat Dr. Ashley’s words, “I pledge as The Rory David Deutsch Professor of Neuro-Oncology to honor Rory’s life by working diligently to push Duke’s research forward as quickly as possible so no other family must endure the pain of losing a loved one”.  At the Ann & Robert Lurie’s Children’s Hospital in Chicago, Illinois, the brain tumor research is under the direction of Dr. Oren Becher, who is the named Rory David Deutsch Malignant Brain Tumor Research Scholar.

The dream of realizing the purpose of our mission is reflected throughout this website.  We always have maintained that the success of The Foundation cannot be measured solely by the amount of dollars raised.  The Foundation success is a result of your participation, devotion and dedication.  Coach Mike Krzyzewski passionately expressed these words at “An Evening With Coach K” event in 2002 benefiting The Rory David Deutsch Foundation. He stated,“ It’s about being on a team, ‘Rory’s Team’.  Being part of something bigger than yourself.  We, Rory’s Team’, are continuing our own championship quest to go the distance against brain tumors.  Our victory will be defined by the energy we bring to that quest, our commitment and the extent of our participation”.

As The Rory David Deutsch Foundation moves into its twenty-second year, our determination is stronger than ever.  Rory’s warm, sweet nature still inspires and motivates us, and so many others, to succeed in our mission.

We continue to be overwhelmed by your ongoing show of support, love and passion for Rory’s Foundation.  From the bottom of our hearts-thank you.

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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