http://neurofibromatosis.forumotion.net/feed/? Latest topics Wed, 04 Feb 2009 18:04:22 GMT 10 http://i144.photobucket.com/albums/r183/paranormalsammy/logo-2.jpg http://neurofibromatosis.forumotion.net/feed/? http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t20.htm DonnaLynn just wanted to let eveyone know that we are still here and trying to make this a wonderful site, please keep checking in Chit Chat and whatever else! Wed, 04 Feb 2009 18:04:22 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t20.htm#51 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t20.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t19.htm DonnaLynn all thought this site in new, I do check it everyday to watch for new members so please sign up! We will get this site together it will just take some time! Chit Chat and whatever else! Thu, 02 Oct 2008 11:59:42 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t19.htm#50 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/hello-everyone-t19.htm http://neurofibromatosis.forumotion.net/introduce-yourself-f3/let-me-just-say-hi-t18.htm DreamWeaver My NF story ~ it all starts with a friend of mine. By chance somehow we met chatting online at a site. I have family members afflicted with different ailments and illnesses, but not NF. Through my friend and her son, I have seen and learned so much. I can never begin to tell any one of you how deeply sorry I am. The words will never describe. Bless you all. And may the kisses of Angels rain down on you one day........psst* and I know they for sure will. Introduce Yourself! Sat, 20 Sep 2008 00:43:24 GMT http://neurofibromatosis.forumotion.net/introduce-yourself-f3/let-me-just-say-hi-t18.htm#48 http://neurofibromatosis.forumotion.net/introduce-yourself-f3/let-me-just-say-hi-t18.htm http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/what-american-accent-do-you-have-quiz-t15.htm DonnaLynn http://www.gotoquiz.com/what_american_accent_do_you_have]]> Forum Games & Jokes Sat, 30 Aug 2008 13:32:12 GMT http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/what-american-accent-do-you-have-quiz-t15.htm#23 http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/what-american-accent-do-you-have-quiz-t15.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm SammyHolden Well... I have NF type 1 which was passed onto me by my father, and my life so far with NF has been one hell of a journey as I'm sure it has for all of you. I was diagnosed from birth and they noticed straight away a problem with my left leg, (I'm not a 100% what it was, I'd have to ask my mum and get back to you) They predicted my leg would break when I was 6, unfortunatly at 18months it broke. I had around 30+ operations on my leg none of which where successful, (One operation included having ... What is your NF story? Fri, 29 Aug 2008 20:40:38 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm#17 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/the-three-word-story-t7.htm SammyHolden
Okay so lets begin! Enjoy

I never knew...]]> Forum Games & Jokes Thu, 28 Aug 2008 17:08:23 GMT http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/the-three-word-story-t7.htm#11 http://neurofibromatosis.forumotion.net/forum-games-jokes-f6/the-three-word-story-t7.htm http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/nf-family-member-is-in-a-contest-t17.htm DonnaLynn

http://www.poetry.com/voteforme/poemvote1.asp?PID=13237604]]> Music, TV, Books and Hobbies! Sun, 31 Aug 2008 01:12:14 GMT http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/nf-family-member-is-in-a-contest-t17.htm#32 http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/nf-family-member-is-in-a-contest-t17.htm http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/music-blondie-t13.htm SammyHolden The're the greatest band on the universe am I right? Music, TV, Books and Hobbies! Fri, 29 Aug 2008 21:03:02 GMT http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/music-blondie-t13.htm#20 http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/music-blondie-t13.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm wa1lsh I am going to attempt to write my NF story. As time goes on I am sure it will be added too. I am going to write about my 50 years of knowing that I have had NF. My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone. Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed ... What is your NF story? Sat, 30 Aug 2008 16:16:01 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm#27 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/newsletter-anyone-t14.htm DonnaLynn Does anyone know how to do a newsletter? I think it would be great for us to have one, I also think it would be fun if someone new did it every month! Anyone want to help? Chit Chat and whatever else! Sat, 30 Aug 2008 12:13:24 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/newsletter-anyone-t14.htm#22 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/newsletter-anyone-t14.htm http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/what-are-you-reading-now-t10.htm DonnaLynn Right now I am re-reading James Patterson Four Blind Mice. Music, TV, Books and Hobbies! Fri, 29 Aug 2008 11:23:24 GMT http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/what-are-you-reading-now-t10.htm#15 http://neurofibromatosis.forumotion.net/music-tv-books-and-hobbies-f12/what-are-you-reading-now-t10.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm DonnaLynn I don't have much of one really. We are not sure where my NF came from. The only other person in my family that had it was my son Brandon. He passed away in 2001 when he was 17 from cancer related NF. He first had to have his right leg including his hip amputated. The tumor was 19 cm big, that was in Jan 2000.the tumor was 19 cm big, that was the size of his head when he was born. What is your NF story? Fri, 29 Aug 2008 13:28:26 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm#16 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/everyone-just-got-an-im-from-scooby-t9.htm DonnaLynn
TO ALL MY NF FRIENDS ------ I JUST WANTED TO LET YOU ALL KNOW I WAS IN THE EMERGENCY ROOM THIS AFTERNOON FOR ABOUT 4 HOURS AND THERE MAY BE A CHANCE I MAY HAVE FRACTURED MY SPINE. I WILL NOT KNOW UNTILL NEXT WEDNESDAY WHEN I GO FOR A MRI. --- I WILL KEEP YOU ALLUP TO DATE ON MY CONDITION. I AM ALSO TAKING A 1,000 MG OF PAIN KILLERS WHICHI HAVE TO TAKE EVERY 4 HOURS, IT WILL ALSO KNOCK MY BUTT OUT

please have him in your thoughts.]]> Chit Chat and whatever else! Thu, 28 Aug 2008 22:07:48 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/everyone-just-got-an-im-from-scooby-t9.htm#13 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/everyone-just-got-an-im-from-scooby-t9.htm http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hiya-i-m-sammy-t6.htm SammyHolden ]]> Introduce Yourself! Thu, 28 Aug 2008 17:01:14 GMT http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hiya-i-m-sammy-t6.htm#10 http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hiya-i-m-sammy-t6.htm http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hello-everyone-t3.htm DonnaLynn ok I will go first. My name is Donna, I have NF1, I am 41 years old and have been married almost 15 years. We live near Atlanta. I have one child, he passed away in Nov 2001 from cancer related NF. Introduce Yourself! Tue, 26 Aug 2008 09:17:09 GMT http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hello-everyone-t3.htm#3 http://neurofibromatosis.forumotion.net/introduce-yourself-f3/hello-everyone-t3.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/we-have-a-chat-room-t4.htm DonnaLynn we have a chat room located at the top of the home page. Chit Chat and whatever else! Tue, 26 Aug 2008 09:51:57 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/we-have-a-chat-room-t4.htm#5 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/we-have-a-chat-room-t4.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/category-or-topic-ideas-t2.htm DonnaLynn does anyone have a category or topic idea? Please tell us. Chit Chat and whatever else! Tue, 26 Aug 2008 09:15:17 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/category-or-topic-ideas-t2.htm#2 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/category-or-topic-ideas-t2.htm http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/logo-anyone-t1.htm DonnaLynn Hello anyone has an idea for a logo? Does anyone know how to make one? Chit Chat and whatever else! Tue, 26 Aug 2008 09:12:51 GMT http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/logo-anyone-t1.htm#1 http://neurofibromatosis.forumotion.net/chit-chat-and-whatever-else-f7/logo-anyone-t1.htm