Stories of NF: Malorie D.

Mar 22, 2017, Posted in NF Hero, NF1

“My name is Malorie Lynn and I'm four years old. I'm a pre-KINDER student at a school in Texas. I love riding bikes coloring playing with my dolls and spending time with my mom, dad, sister, and brothers, and what makes me happy is my mom and dad because they take such good care of me.”


Stories of NF: Kelly R.

Mar 14, 2017, Posted in NF Hero, NF1

I remember the day I couldn’t see out of my left eye. I became obsessed with waving my hand in front of my face, searching for the sweet spot where I could make it disappear. Earlier that year I suffered through a bout of Idiopathic Uveitis. Believing it had returned, I went to the ER expecting to be given a script for steroid eye drops and then be on my way. Wrong! I was told that my optic nerve was swollen and apparently that’s a big deal; I was admitted.


California Dreamin’…. of NF Endurance Races

Mar 3, 2017, Posted in Community, Fundraiser, NF Endurance, NF Hero, NF1

The Children’s Tumor Foundation NF Endurance Team gives participants the opportunity to run, bike, or swim in endurance events across the country.  We asked one of our athletes, Dawn Lowell, why she races with us and what it means to her family.

NF2 Clinical Trials: Stories of Progress

Feb 28, 2017, Posted in NF Hero, NF2, Science

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.


Stories of NF: Adriana W.

Feb 21, 2017, Posted in NF Hero, NF1

“NF impacts our lives in both negative and positive ways. We have met so many amazing people because of NF that we are so grateful for because they understand and are a great support system. Unfortunately it impacts us in negative ways too, you just never know and every time you think you’ve got a handle on things, something new pops up and brings you back to the realty that is living with NF. You just never know what to expect and every new bump or mark you wonder, is that normal, or is this a new plexiform? Every behavior, is this normal or from her medicine?"

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