Where Does My Donation Go?

60 Million Dollars. That is the cost of taking a drug from discovery through completion of FDA approval. But every dollar raised funds labs, drug tests, grants, clinical trials and everything in between to get us closer to that FDA approval. Thus, your donation is not just a donation – it is an investment. CNFWJ is dedicated to funding NF research and only research, and so every dollar raised is attributed directly to research endeavors. 

CNFWJ is thrilled to announce that its recent distribution went to furthering an incredibly promising clinical trial (MEK inhibitor) for the treatment of inoperable plexiform neurofibromas (complex tumors). Thus far, the preliminary results have been remarkable, showing consistent decreases in tumor volume. This has never been heard of or seen before. This trial is given us the most hope to date. 

This highly successful clinical study is the result of a major investment of the Children’s Tumor Foundation (CTF) NF Preclinical Consortium. CNFWJ’s contribution led to more children off the wait list at one of the trial facilities and onto this ground-breaking clinical trial faster. Because of your support, more children have the opportunity to a brighter future.

In addition, just this past month, an orbital plexiform policy statement concerning NF ophthalmologic issues - funded by CNFWJ - has formally been accepted for publication in the journal Ophthalmology. This is the flagship journal for the largest organization of ophthalmologists in the world, with the largest distribution. We are hopeful this publication will facilitate additional clinical trials for plexiform neurofibromas and, importantly, inform key players (i.e.., pharma, FDA, regulatory agencies) about the challenges the medical profession has in making a positive impact on the care of children with them.  This big step forward is a direct result of a successful medical consortium held by CNFWJ in conjunction with the CNFWJ DC Golf Tournament.

CNFWJ plans on continuing to support these and other research endeavors specifically relating to NF1 and its devastating effects, with another proposed distribution scheduled for early 2017. 

And when CureNFwithJack becomes CuredNFwithJack?  Jack has a massive party already planned for his NF friends and all those who helped. Then CNFWJ goes back to work helping children become and remain disease and disorder-free.