Hi! i had to do a report on a genetic disorder in science and i chose Nf1 because it really sticks out to me. My mom (Bridget) and Kristen told me about it about a year and a half ago and i was really interested in finding out what was the cause. Your websight is very informative and i wish julia and the rest of the family the very best!! :) See you soon!!

Hi there Perfetti Family, Just wanted to stop in and say Hi. I hope you are all having a great day and enjoying the last bit of your summer. Take care.

I just came across your site while trying to learn exactly how I can make a difference in getting the word out about NF. My oldest daughter was diagnosed with an optic glioma more than a year ago and it has continued to grow and will require chemo. Our family struggles with this on a daily basis and its possible the my husband has NF one so each of my 5 children may be affected. Thank you for getting the word out.

My daughter was diagnosed with NF1 when she was 4 months old. She is now 2 (almost 3) and happy and healthy. We too are praying and hoping for a cure. Aloha.

Hi! I just watched the Today show clip. My 8 year old daughter was diagnosed with NF1 at 8 months old. She has many CAL spots, Lisch Nodules, a thickened Optic Nerve, and partial seizures. We know what you are going through. Thank you for sharing your story!