We at CTF understand that not everyone living with NF is able to be seen by an NF expert on a regular basis or attend NF Forums, symposiums, or conference. With that in mind we are excited to bring you this webinar series!
Your ongoing support has allowed us to take huge steps forward in 2017 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.
Earlier this month, more than 70 researchers, clinicians, patients, staff, and other experts gathered in Palm Beach, Florida for the first Synodos Network Meeting, hosted by the Children’s Tumor Foundation.
Amelia was diagnosed with NF2 at the age of 4. We are constantly at doctors and very scared of anything new that comes up. Her brain tumor was malignant and a grade 3, which was very scary and turned our lives upside down. We have become stronger by keeping things positive, crossing bridges only when they appear, and keeping everything "yellow" (Amelia's favorite color).
By Alex Hubbard
NASHVILLE — I can tell you the exact moment I realized my voice was broken.
I was sitting in a cubicle inside Pulitzer Hall, the home of the Columbia University Graduate School of Journalism. I was on the phone with a former top official at U.S.A. Hockey — a man whose name I knew well from having grown up a hockey fan. He was supposed to give me an interview for my master’s project, a large journalism assignment that most other graduate students would compare to a thesis. I was excited for the help and also excited to speak to someone so well known to me. Then he said it.
“I’m sorry. I want to help you, but I can’t understand you.”