BUILDING ON
More Than a Decade of Progress
Today's research portfolio builds on years of CureNFwithJack investment in clinical research, collaborative science and medical education.
Among our earlier efforts:
Helping Advance the First FDA-Approved Treatment Specifically for NF1 Tumors
One of CureNFwithJack’s earliest research investments supported clinical-trial work that contributed to the development of selumetinib (Koselugo), which became the first FDA-approved drug specifically for NF1-associated plexiform neurofibromas.
For families affected by NF1, this represented an historic shift: for the first time, there was an approved medicine capable of shrinking certain previously inoperable NF1 tumors.
This was an important milestone — and a reminder of what sustained research can accomplish.
Advancing Our Understanding of NF1 Low-Grade Gliomas
CureNFwithJack helped support a major collaborative research effort focused on low-grade gliomas, one of the most important brain tumors affecting people with NF1.
By bringing together researchers and tumor samples from multiple institutions, the project allowed scientists to study these tumors at a scale that had not previously been possible. The work increased understanding of the biology of NF1-associated low-grade gliomas and contributed to peer-reviewed publication and future therapeutic research.
The collaboration demonstrated something CureNFwithJack continues to believe strongly:
difficult scientific problems are often best solved together.
The live site currently describes this as a global collaborative project that gathered a sufficiently large set of specimens to advance understanding of NF-associated LGGs and resulted in publication in Neuro-Oncology. CNFWJ is committed to accelerating medical research, driving community action, and raising funds to end NF.
Bringing NF Experts Together to Improve Care
CureNFwithJack has also invested in scientific and medical education.
We hosted a national symposium bringing together NF specialists to discuss important ophthalmologic issues affecting people with NF, including tumors like Jack’s.
That collaboration contributed to a peer-reviewed publication in Ophthalmology and helped share expert knowledge with the broader medical community. CNFWJ is committed to accelerating medical research, driving community action, and raising funds to end NF.
Sometimes advancing care begins by getting the right people in the same room.
Bringing NF Experts Together to Improve Care
CureNFwithJack has also invested in scientific and medical education.
We hosted a national symposium bringing together NF specialists to discuss important ophthalmologic issues affecting people with NF, including tumors like Jack’s.
That collaboration contributed to a peer-reviewed publication in Ophthalmology and helped share expert knowledge with the broader medical community. CNFWJ is committed to accelerating medical research, driving community action, and raising funds to end NF.
Sometimes advancing care begins by getting the right people in the same room.

