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I wanted to post this message because of something that came to mind as I was reading one of the boards about how we found out about neurofibromatosis. It was 42 years ago. Not as much was known about nf as we know now. We where told about the shorter life expectancy of people with nf and that they do not live beyond a certain age; we know now that is not the case. That was how little was know about nf at the time. This is one of the reasons we must get as much information out about nf as we can. I would like to hear from you. How old where you, and what where you told, when you or a family member was diagnosed with neurofibromatosis?


  1. How old were you when you found out?

  2. My mom first heard when I was eight months old. Less then a year. Of course I didn’t know until I was older.

  3. Hi Reggie,

    I want to thank you for all you are doing to raise awareness and funds for NF research. My daughter has NF1. She was diagnosed at 4 months of age. Now, she is six years old. She has tumors throughout her body, scoliosis, and learning disabilities. So far, nothing is life-threatening.

    I joined the NF Marathon Team through the Children’s Tumor Foundation, about three years ago. Since then I have run 2 full marathons (26.2 miles) and about 8 half-marathons. The support and encouragement I have received from other team members who are touched by NF has given me hope and the strength to keep me going when things go bad.

    The Children’s Tumor Foundation has two teams doing the Race Across America this year. The two NF Endurance Teams will be cycling across the country in hopes of raising awarenss and money for NF research.

    We live in NJ, so I haven’t seen all of the press you have received, but I thank you for having this site and keeping the world informed. BTW, I love the t-shirts!!!

    You are not alone.


  4. Dear Florence,

    Thank you for your post. I’am more then happy to do what I can to bring awearness to nf. It never seems enough. It feel great to know that I’ AM NOT ALONE. I know there are many that going through the same problems. Please keep in contact.

    Make it a tremendous day


  5. Florence,

    As a parent, I cannot even begin to fathom the idea of a child of mine having “tumors throughout her body.” How do you deal with this? My heart is out to you and every parent whose child has nf.


  6. What I have learn, and its a on going thing. You don’t get to a point and stop. You have to work on it daily. Speaking for myself. I beleive there is a God, and I know he loves me. I beleive there is a reason for everything. We don’t have all the answers, and I don’t need them. It is in Him, that I find comfort. I have hard days. I have days that I worry about what will happen with my disorder. but you have to beleive in hope. Sometime we are blessing others in ways we may not be aware of. I say keep smiling. others will smile with you. 🙂

  7. My mother first noticed my lumps when I was 6 months old. She also as NF, as did my Grandfather. I have been very blessed to only have the outward tumors, most are small but do cover most of my body. I have a large one that covers my left thigh that I have had reduced twice. I do a a mild case of scoliosis, but other than that I dont have any other medical complications.

    Since My mother has NF, growing up I really did not think anything of it. NF was just a part of me. My family did not treat me any different and my friends accepted me for who I was.

    Thank you Reggie for you blog and everything you do.


  8. I’m happy to be of help. I won’t stop. I will find ways to do more.

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