The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting a research study aimed at helping adults with NF2 who are deaf or have severe hearing loss manage stress associated with NF2
Every year, on the last day of February, we recognize Rare Diease Day, a time for the entire rare disease community to come together to raise awareness. NF affects 1 in 3,000 people overall; NF2 is even more rare (1 in 25,000) and schwannomatosis even more rare (1 in 40,000). These days, there is a lot of excitement and hope for the MEK clinical trial for inoperable NF1 plexiform tumors (click here to read about the trial). Over 70% of patients had a dramatic response and saw their tumors shrink 20% or more. This is unprecedented and really makes us hope that this drug will soon be approved by the FDA as the first-ever treatment for NF1. But what about NF2? Even though it's the MEK trial making headlines in NF these days, there is a lot going on also for NF2. In recognition of Rare Disease Day, we're sharing these stories about two adults living with NF2 and their experiences in the Avastin (Bevacizumab) trial.
By Salvatore La Rosa, PhD, Children’s Tumor Foundation VP, Research and Development
These days there is a lot of excitement and hope for the MEK clinical trial for inoperable NF1 plexiform tumors (click here to read about the MEK trial). Over 70% of patients had a dramatic response and saw their tumors shrink 20% or more. This is unprecedented and really makes us hope that this drug will soon be approved by the FDA as the first ever treatment for NF1. But what about NF2? What is the status in the clinic for this condition? Well, I would like to focus on four drug trials that are ongoing and that promise to bring great news for our patients in the short term.
Your ongoing support has allowed us to take huge steps forward in 2016 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.
The Children’s Tumor Foundation is pleased to announce the launch of the 2017 Young Investigator Award (YIA). Interested candidates can submit their letters of intent, also referred to as pre-applications, via CTF’s online application portal from Dec 12, 2016 to Jan 9, 2017. Initiated in 1985, the YIA is CTF’s longest running award program and provides two-year salary support to outstanding early career scientists worldwide who are interested in becoming independent investigators in neurofibromatosis.