In May 2018, the NF community gathered in Atlanta, GA for a long weekend of patient engagement training, leadership training, research updates, and patient and family support. We asked two first-time attendees to reflect on their experience.
Study Shows that Drug Combination Therapies Effective in Treating Schwannomas and Meningiomas
The Synodos for NF2 consortium of the Children’s Tumor Foundation (CTF) today published its first set of results and released its second set of data in the leading scientific journal PLOS ONE.
By Salvatore La Rosa, VP Research and Development
Early investments from the Children’s Tumor Foundation are paying off and delivering innovative and impactful research. It’s great to see research moving forward thanks to the support of both private and public funding. Our philosophy of betting on high-risk high-reward projects is proving successful and will eventually help us realize our vision of ending NF.
I was 16 when I began to have hearing issues. After getting my hearing tested, the results revealed profound hearing loss in my right ear. The hearing test lead to an MRI and then to my diagnosis of NF2.
For me, the physical pain that comes with NF pales in comparison to the mental weight the disease carries.