Funding

Through our numerous events and fundraisers, CNFWJ has raised almost $3 million for NF research on its own behalf and on behalf of other NF-related entities. But we aren’t stopping there. We won’t stop until a cure has been found and we put an end to NF forever.

CNFWJ is dedicated to funding NF research and only to funding research, and so every dollar raised after costs is attributed directly to research endeavors.

To date, in addition to raising well over a million dollars for NF-Related entities, CNFWJ has:

  • Sponsored Clinical Trials Leading to the First NF FDA-Approved Drug. CNFWJ’s first distribution of funds went to furthering clinical trials that has led to the first ever FDA-approved drug (Koselugo) known to reduce tumor size in a significant number of NF pediatric patients with inoperable plexiform neurofibromas.
  • Funded Global Collaborative Project on Low Grade Gliomas– CNFWJ was a sponsor for the research by a group of NF experts who analyzed – for the first time in history – a large enough number of specimens of specific NF brain tumors (low grade gliomas – “LGG”). Their work led to an increased understanding of LGGs in children and adults with NF, and to the publication on this subject in the academic journal Neuro-Oncology. The research also resulted in important conclusions that will have implications on treating LGGs and future research on potential therapeutic strategies.
  • Hosted A Symposium of specialists from around the country, which led to the publication in the journal Ophthalmology concerning NF ophthalmology issues, including tumors like Jack’s.

CNFWJ has big and bold funding plans for 2021-2022. It’s next series of distributions will target two distinct areas of NF research:

  • Whole Body MRIs (for accurate tumor detection)
  • Gene Therapy Initiatives

Stay tuned!