Tag Archives: Children’s Oncology Group

#MoreThan4 NCI Email Exchange

The National Cancer Institute recently sent a response to an email sent to them containing a selfie and a #MoreThan4 flyer. You may have received one. Below is the NCI email and our response. Thank you for taking the time … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , | 4 Comments

Fixing the Faults

This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Cancer Drug’s Valley of Death – Where is it, What is it?

To truly understand the problems with development of drugs specific to childhood cancer, and rare disease in general, examine the FDA’s Therapeutic Development Pipeline below.  The pipeline represents the normal development of an average drug.  The average successful drug will … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , , , | 3 Comments