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Stories of NF: Colin C.

Apr 18, 2018, Posted in NF Hero, NF1

Colin was 6 years old when he was diagnosed with NF1. Colin is now 10 and is a diehard NY Jets and Michigan Wolverine fan. When he is not outside playing with his friends, you can usually catch him playing Madden 18 on the X-box. He is also a thrill seeker and will go on just about any ride out there. Colin does have to have annual MRIs and eye exams to monitor developing tumors, but luckily, he continues to live a normal child's life, playing baseball, swimming, and spending time with his friends.

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Stories of NF: Jennifer W.

Apr 8, 2018, Posted in NF Hero, NF1

I was diagnosed with NF1 at 22 months old. I take it one day at a time. If I’m hurting I try to keep going on with it. My husband keep an eye on my tumors making sure they haven't grown none and I keep my appointment with my doctors.

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Stories of NF: Alex S.

Mar 21, 2018, Posted in NF Hero, NF1

Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.

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Stories of NF: Kellee F.

Mar 7, 2018, Posted in NF Hero, NF1

I was 16 years old when I was diagnosed with NF1, following a series of doctor appointments over the course of four years because of chronic headaches. My father was diagnosed before I was born and now I was being diagnosed with it.

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Accelerating NF Research Thru Technology

Feb 28, 2018, Posted in Latest News, NF Hero, NF2, Science

By Onno Faber

Rare Disease Day is recognized every year on the on the last day of February. It’s a time for the entire rare disease community to come together to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Neurofibromatosis 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). 

We asked NF2 patient Onno Faber to tell us about his journey to a diagnosis and how he leveraged his experience as a Silicon Valley technology entrepreneur to accelerate rare disease research & drug development.

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