jen (Neurofibromatosis) - ProfilesArchive

About Me

I am married to Terri making me a step-mom to her 3 kids, ages 16, 19, and 22. I work in a college library. I'm in school for my Master of Arts in English. I play pool in 2 leagues.

I have Neurofibromatosis, also known as NF. There are two types of NF, NF1 and NF2. I have NF1. My father and brother also have NF1. They are both on MySpace.

My Dad: Wa1lsh
My Brother: Poker Tramp

Check out my NF tattoo!
I have the NF alien logo designed by Gillian Anderson tattooed on my ankle. Click on the pic to enlarge it, and leave me a pic comment if you want :)

I have lots of friends on here with NF. If you are looking for friends with NF, let me know and I can send out a bulletin to my friends with NF.

Please, read my blogs.

My Interests

Writing; Reading; Playing pool; Ocean and beaches

"Neurofibromatosis, pronounced Neuro-fi-bro-ma-to-sis (NF for short), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births), even though not many people are familiar with it." There is no cure for NF.

I'd like to meet:

I would love to meet Gillian Anderson (Scully from the X-Files). Gillian's brother has Neurofibromatosis. She is involved with NF groups, serves as a spokesperson for NF, she has addressed congress to increase funding and education for NF research projects, and much more. She has also done original artwork and merchandise logos with proceeds going to NF. It is her NF Alien logo that I have a tattoo of on my ankle. If I meet her I want her to autograph my ankle near her artwork. Then I will go to my tattoo artist so he can tattoo over her signature and make it part of my tattoo. Or, I could just give her a hug. :)

I would also like to meet Ellen Degeneres and ask her if she can teach me to dance. lol.

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List of NEUROFIBROMATOSIS Websites
Neurofibromatosis, Inc.: www.nfinc.org
NF Cure Project: nfcure.org
NF Mid-Atlantic: www.nfmidatlantic.org
Neurofibromatosis, California: www.nfcalifornia.org
The Neurofibromatosis Association (UK): www.nfauk.org
Understanding NF1: www.understandingnf1.org
NF Ireland: www.nfaireland.ie
Children's Tumor Foundation: www.ctf.org
Lexi Rose Foundation: www.lexirosefoundation.com
Austin Call Foundation: www.austincall.org
The Butterfly Challenge: www.butterflychallenge.com
_________________
Shopping ~ Proceeds go to NF Research
Shop for a CURE!
The Official Gillian Anderson Website www.cafepress.com/gaws
I loved Gillian Anderson's artwork for the NF Alien logo so much that I got the little alien figure as a tattoo! Check out my pics to see it!

One of my MySpace friends set up the following three stores. The people in the pictures are our friends on MySpace with NF. I am on some of the items.
www.cafepress.com/nf_cure
www.cafepress.com/nf_cure2
www.cafepress.com/nf_cure3

Profits from Earl Grey Tea go to NF Research: www.joyfulteas.com

Music:

Stevie Nicks; Melissa Etheridge; Indigo Girls; Faith Hill; Bob Dylan; America; Violent Femmes; Blondie; Mary Chapin Carpenter; Tracey Chapman; Tori Amos; Howard Jones; REM; Steely Dan; The Beatles; Janis Joplin; Wedding Singer soundtrack; I love the 80's; Disco and 70's is fun, too!

Movies:

What Dreams May Come; Beetlejuice; Wedding Singer; Better than Chocolate; Nightmare Before Christmas; As Good as It Gets; Dogma; Finding Nemo; Dead Poet Society

Television:

House; L-Word; Heroes; Ghost Whisperer; Medium; Numb3rs

Books:

Last Summer at Bluefish Cove; Harry Potter (all of them); Monster at the End of this Book; The Writer Magazine; I love reading plays and love reading books on writing.

Currently Reading: The next thing on my list, by Jill Smolinski

My Blog

NF, Hypothyroid, and Lupus. Oh My!

So I have Neurofibromatosis (NF1) and I have hypothyroid condition. Last week I was diagnosed with Lupus. There is no connection between any of these disorders, I just happen to have NF, Hypothyroidis...
Posted by jen (Neurofibromatosis) on Wed, 16 Apr 2008 09:21:00 PST

I was tagged - 10 things about me

Ok, how tagging works is someone tags you and you have to write a blog about 10 weird, random facts, etc. about yourself. Then afterwards you must tag 10 other people to do the same, but you can...
Posted by jen (Neurofibromatosis) on Sat, 01 Mar 2008 06:43:00 PST

The Elephant Woman is a Side Show

This is the story that I read for the public reading for my graduate fiction writing workshop class final. The reading went very well. Terri came to hear me read and she brought me a dozen of the...
Posted by jen (Neurofibromatosis) on Thu, 20 Dec 2007 06:56:00 PST

NF Fundraiser on 9/15/07 ~ Results & Reflections :)

The Friends Ride for NF 2007 took place on September 15, 2007. http://www.friendsridefornf.org/ I raised a total of $1,580.Together we raised over $40,000. All of this money is going into researc...
Posted by jen (Neurofibromatosis) on Sat, 06 Oct 2007 08:19:00 PST

I am in pain today, July 27, 2007

It is Friday, July 27, 2007, and the time is 11:57am. I am at work right now. I am in so much pain today. I have had the pain all week, but today the pain is different. You see, sometimes I feel...
Posted by jen (Neurofibromatosis) on Fri, 27 Jul 2007 09:17:00 PST

My head pain ~ news from my neurosurgeon

I have had severe head pain that comes and goes for quite some time now. The pain has been getting progressively worst. I experience pain a couple of times per week, and it is to a point where I canno...
Posted by jen (Neurofibromatosis) on Thu, 07 Jun 2007 07:18:00 PST

I am the Elephant Woman ~ Neurofibromatosis: Creative Writing

I am the Elephant Woman. I am in the second grade. I am the smartest kid in my school. I can spell the biggest word in the world: N-E-U-R-O-F-I-B-R-O-M-A-T-O-S-I-S. I am the Elephant Woman. I a...
Posted by jen (Neurofibromatosis) on Sat, 12 May 2007 06:32:00 PST

May is National Neurofibromatosis month ~ PLEASE READ! ~ I have NF

I have a genetic disorder called Neurofibromatosis. "Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any ...
Posted by jen (Neurofibromatosis) on Mon, 23 Apr 2007 07:53:00 PST