Personal Stories

Liz & Rachel Campana

Liz & Rachel Campana

My name is Liz and I have a 15 year old daughter, Rachel who has NF type 1.  It’s hard to believe it’s been nearly 14 years since she was first diagnosed. When the doctors told us Rach had NF, and we started to learn about everything that COULD happen to her, I was so...

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Gracie Hanlon

Gracie Hanlon

Gracie changed our lives by introducing us to a disease we never had heard of before.  Awareness became one of our primary goals for NF.  And fundraising to make a difference became a goal as well. We found the two objectives complimented each other. Because of Gracie...

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Dennis Pilkinton

God blessed me eighteen years ago with a beautiful son. Never in my life would I have ever dreamed that one person could teach me more about courage, determination, love, and passion than this blessing from heaven. As I watched him from a distance he lived in his world with ridicule,...

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Mike Forbes

Mike Forbes

My life with NF is a journey of learning and growing into compassion. NF has led me down the road to operating rooms as a child and to educational centers for learning disabilities as a teenager. My career in case management for adults with multiple disabilities was directly connected to NF...

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Beverly & Eli Oberlander

Beverly & Eli Oberlander

My name is Beverly Oberlander and I am the middle generation of a multi-generational NF family.  I have it, my son has it, my brother, one of my two nieces, and I lost my dad to the disease in 2000.  So, I have seen NF from every perspective imaginable – as a patient, a...

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Marcy Perlman

Marcy Perlman

I am 52 years old, and I have had NF-1 since birth, the result of a spontaneous mutation.  My parents are deceased, and I have two older sisters, both unaffected.  I have cutaneous and plexiform tumors.  NF mostly affects the left side of my body, including vision, hearing,...

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Greg Barnier

Greg Barnier

Hi, my name is Greg Barnier and I have NF2.  I was diagnosed at the early age of 10 yrs.  Since that time 35 years ago,  I’ve had 8 cranial surgeries to remove brain tumors, 4 spinal surgeries to remove tumors from within the spinal canal and brachial plexus, plus...

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Sally Richards

Sally Richards

My name is Sally Richards, and I have Neurofibromatosis 2 (NF2). This is a genetic disorder in which tumors form on the nerves of the brain and spine (the central nervous system). I’ve lived with the uncertainties of NF2 for 25 years. Early after diagnosis, my challenges seemed...

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Olivia & JT Hernandez

Olivia & JT Hernandez

My name is Olivia, and I am the 4th person to be diagnosed with NF2 in my family. Living with NF2 is second nature to me. I lost my Grandmother and Uncle to the disease as a child, and then my Mother just 5 years ago. Around the same time my son JT was diagnosed as well. I am Deaf, and have...

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Marie Drew

Marie Drew

My name is Marie and my history goes back a long way, starting in 1975.  I became totally deaf in 2000, and today I tell my friends I can’t hear, can’t walk right, can’t see very good, have trouble eating – but other than that, I am really quite healthy! ...

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Tiera Lundy

When I was just 3 months old, my pediatrician noticed that there was a lot of freckling on my body. Because of their size it was predicted that I would have NF. I was officially diagnosed at age 5, which is also when we found a benign tumor in my brain. It was (and still is) inoperable, but...

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Wishing Melissa Shea Malerba the best as she once again runs the #BostonMarathon for #NFincNE. You make us proud! #BostonStrong #Boston