Tags » Neurofibromatosis

What is "Living in Hopeland"?

Today is October 21st of 2016, and while the weather is one of the most beautiful of the year, I spent the last hour glued to my computer. 312 more words


One step forward... to crumble to our knees.

Follow up to “Breathless”and Progress Zero, I will be documenting the progress of our daughter who’d recently been diagnosed with Neurofibromatosis 1 or NF-1.

September 15th, 2016 Thursday… 1,168 more words


LETTER: Wilmington's Wilston Johnston Explains Why He Rides in the NF Coast to the Cure Bike Ride

Dear Editor,

This year will be my 5th NF Coast to the Cure Bike Ride. I started riding for NF when my friend Scott Seeley asked me to join him in supporting his friend whose daughter has the disease. 492 more words


Learn to Dance in Your Storm

I absolutely adore this quote. My husbands grandparents gave me a plaque with this quote on it telling me that when they saw it they just thought of me. 501 more words

Physical Features.....the stares

My physical features maybe hard for you to look at. If I am honest with myself it is hard to look at myself and see the tumors in my face, legs and neck.  408 more words


Running Scared....Into My Father Arms

I have been running from my appointments lately. I am not scared, but I am tired. There is so many appointments and concerns. I have to first go get my results from my biopsy. 329 more words


Trying to Accept my NF

When I was younger, my Neurofibromatosis did not affect me like it does now. But, I do wonder if I had pain and challenges but ignored, what my body was saying. 364 more words