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If you're reading this, chances are you or somebody you know has just found out they have a disease called
neurofibromatosis. And though it will take some time for the idea to sink in, you probably have a million
questions. Like, how did this happen? Will I get sick? What can I do about it? And, how do you even pronounce
neurofibromatosis?
It's okay to have questions. After all, this whole experience may be a little scary. But the scariest part, by far, is not having answers. This Web site was designed to be a starting place for new patients with neurofibromatosis and their families. An honest resource that addresses many of the concerns you might have and also provides medical and support group contacts.
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MEET JESSICA!
One Mom’s Story about her special hero in her life.
Meet others in the DFW area!
Become a member of our auxillary group:
"Friends of Children with NF."
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| Hi! MY NAME IS BUDDY, and I LOVE to travel! I am taking a vacation around the world, meeting children affected by Neurofibromatosis. The “NF Buddies” book has taught me a lot about NF, and I would love to share my book with you! There are thousands of children throughout the world with Neurofibromatosis. “Buddy” is a teddy bear who hopes to visit them all and he would like to drop by your house for a week. Buddy travels through the mail, accompanied by a copy of the “NF Buddies” book. During his visit, we would like you to read Buddy’s book, sign it, and then pose for a photo postcard with Buddy. Your parents will then help you mail the postcard to NF Inc. CA and send Buddy to meet his next new friend. We will post the photo online, your first name (or a nick name), your state, country, or province.
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Note to parents - As parents ourselves, our board members are very excited about this program and are dedicated to preserving the privacy of the children. Our goal is to help the children feel less isolated while learning a great geography lesson! We would love to have you join us in this worthy cause!
If you have any questions about this program or would like to sign up to host Buddy, email Maria. Buddy hopes to meet you soon! TAKE A LOOK AT WHERE BUDDY HAS BEEN!
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LEGAL AND PRIVACY STATEMENT ·
CONTACT US |