NF
Resources
WELCOME
to NF Resources
Here is a place to find answers, ask questions and find out more about Neurofibromatosis
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NF1 Talk
OUR STORIES
Sarah, 41
NF1
Abbey, 40
sister with NF1
LIFE SKILLS CENTER
When I lecture to first-year med students to educate them about neurofibromatosis type 1 (NF1), I tell them that NF1 provides a grab-bag of surprises. You could know you have NF1, be chugging along with your life and then get surprised by a brain tumor diagnosis, as what happened to me in 2010. On the other hand, you can be like a friend of mine who didn't know she had NF1 until she was pregnant with her first child and started growing neurofibromas.
More info coming soon.....
Here are tips and tricks people in our NF1 community have found helpful. Have a problem? Check it out and see if we already have an answer or some extra info.
Submit Your Story
Often we are asked, what is it like to have NF1. Mostly we are asked by parents who have just had their child diagnosed. Please write a short story about your experience and email it to info@nfresources.org and we will post it here.
John
NF1
John is an avid cyclist and here is his story for the Coast to The Cure
The main reason that I am riding is my daughter Carin. Carin is 21 years old and she means the absolute world to me. When Carin was 3 months old, her mother was bathing Carin and she noticed a café-au-lait, a birth mark, on Carin’s elbow and with my family history of NF that is all that was needed to make a diagnosis.
Experience with NF? Add your story below and we ill contact you about publishing it here!