Webmaster
11-23-2004, 08:22 PM
Howdy,
Some of you know I have a bit of a gimp leg. Well my problem is I have Neurofiber Mitosis (AKA NF). Basiclly all through my pelvis, lower spine, and especially down my sciatic nerve on my left leg.
http://mister44.com/projects/mri/MRI-01.jpg
But I am a lucky one. Other than lots of pain, a slight increase that it will turn to cancer, some atrophee in my leg, and a slight limp, I am doing ok. There are people lots worse off.
If you have seen a person with small to large round nodules all over their face and body, that is NF. For some people it isnt just uncomfortable, or disfiguring, it is life threatening. These tumors can turn huge and destroy the part of the body they are in. My wife is in touch with the national office (www.nf.org) and is the Kansas represenative for them. She has heard horrible stories of a boy who lost a foot because of NF, and a girl who probably wont live another month.
The sad thing is their is NO cure. They can't even stop the disease when it decides to do something crazy.
So I am here to ask if you can help out. You dont have to do much. If you shop at Amazon.com, please click this link to get to the site:
www.amazon.com/exec/obidos/redirect-home/neurofibromato01
While it doesnt say anything, basically a percentage of what you buy, Amazon will donate to NF.org. So add this link to your book marks, and when you buy from Amazon, click the link first.
If you want to go one step further, join igive.com:
www.iGive.com/html/refer.cfm?memberid=381139&causeid=1026
By clicking on the above link it will tell how and why to register with iGive.com. Its free and it is a reputable company. Once you do you can shop their mall full of hundreds of online stores:
Lands' End, PETsMART, Barnes & Noble, L.L.Bean, Gap,
Expedia, Eddie Bauer, JCPenney, Office Depot, J.Crew,
Dell, eBay, Spiegel, Drugstore.com, Orvis, HSN,
Hallmark, J.Jill, Chadwick's, Best Buy, and more!
Once you are signed up, click on "shopping" at the top and you can find stores based on what they carry. Like Bookes has Barnes and Noble. It will show you the store, how much will be donated, and allows you to click through to go to the site to shop. A percentage of your purchace again goes to www.nf.org.
Again - both are free, both are reputable, and both will help find a cure with out you doing much but clicking some links and filling out a form.
I am not really good at asking for help, but my wife insisted I post this on the forums I frequent. And she is right. If I can get a couple people to join up, that just means more money for nf.org and maybe a cure.
Thanks for any help and God bless!
Steve Novak
AKA Mister.44
AKA The Webmaster.
Some of you know I have a bit of a gimp leg. Well my problem is I have Neurofiber Mitosis (AKA NF). Basiclly all through my pelvis, lower spine, and especially down my sciatic nerve on my left leg.
http://mister44.com/projects/mri/MRI-01.jpg
But I am a lucky one. Other than lots of pain, a slight increase that it will turn to cancer, some atrophee in my leg, and a slight limp, I am doing ok. There are people lots worse off.
If you have seen a person with small to large round nodules all over their face and body, that is NF. For some people it isnt just uncomfortable, or disfiguring, it is life threatening. These tumors can turn huge and destroy the part of the body they are in. My wife is in touch with the national office (www.nf.org) and is the Kansas represenative for them. She has heard horrible stories of a boy who lost a foot because of NF, and a girl who probably wont live another month.
The sad thing is their is NO cure. They can't even stop the disease when it decides to do something crazy.
So I am here to ask if you can help out. You dont have to do much. If you shop at Amazon.com, please click this link to get to the site:
www.amazon.com/exec/obidos/redirect-home/neurofibromato01
While it doesnt say anything, basically a percentage of what you buy, Amazon will donate to NF.org. So add this link to your book marks, and when you buy from Amazon, click the link first.
If you want to go one step further, join igive.com:
www.iGive.com/html/refer.cfm?memberid=381139&causeid=1026
By clicking on the above link it will tell how and why to register with iGive.com. Its free and it is a reputable company. Once you do you can shop their mall full of hundreds of online stores:
Lands' End, PETsMART, Barnes & Noble, L.L.Bean, Gap,
Expedia, Eddie Bauer, JCPenney, Office Depot, J.Crew,
Dell, eBay, Spiegel, Drugstore.com, Orvis, HSN,
Hallmark, J.Jill, Chadwick's, Best Buy, and more!
Once you are signed up, click on "shopping" at the top and you can find stores based on what they carry. Like Bookes has Barnes and Noble. It will show you the store, how much will be donated, and allows you to click through to go to the site to shop. A percentage of your purchace again goes to www.nf.org.
Again - both are free, both are reputable, and both will help find a cure with out you doing much but clicking some links and filling out a form.
I am not really good at asking for help, but my wife insisted I post this on the forums I frequent. And she is right. If I can get a couple people to join up, that just means more money for nf.org and maybe a cure.
Thanks for any help and God bless!
Steve Novak
AKA Mister.44
AKA The Webmaster.