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View Full Version : Helping Out The Myelin Project



leukodystrophy_girl
10-06-2003, 01:41 PM
Hi, I'm new to old version. Before I really start posting, there is something that I would like you all to consider. If not for you, but for someone you love who has been affected by one demyelinating disease or another. These diseases include, adrenoleukodystrophy, (ALD_) metachromatic leukodystrophy, (MLD) multiple sclerosis, (MS). Consider helping the myelin project a nonprofet organization that was started back in 1993 by Augusto and Michaela Odone. There only son Lorenzo was diagnosed with x-linked adrenoleukodystrophy, when he was 5 years old. ALD is a neuro degenerative, genetic disorder that attacks the adrenal glands, and the myelin sheath. Or the protective coding, that raps around nerve axons the thread-like structures that stick out of nerve fibers. Over time, this destruction leads to the inability to eat, move, see, speak, hear, or think. Told by many doctors that there was nothing to help Lorenzo, the Odones decided to take matters into there own hands. They started by inventing an oil, that is still being used today. Inventing this, wasn't enough for the Odones who wanted to do more to try and find a cure not just for Lorenzobut for the more than two millian in world who suffer from demyelinating disease.

locustfurnace
10-06-2003, 04:12 PM
I get messages similar to this every day in my email. This amounts to spam, no matter the intentions. If you want to plead your case, there are many forums out there that do deal with disablities, diseases and disorders. If you have problems finding them, do a search on google.
If someone seen this, and felt compelled to help out, How would they do such a thing? Without them having to now track down this foundation you mention.
Your message does not help very much your plea. You neither included a website to this foundation, nor a telephone number or ANY contact information.
The fact that you registered on the board, does not give you leeway in posting spam.

Goslow
10-07-2003, 07:05 AM
Not to make light of anyones disability but on the subject of spam I enjoyed the response here Tit for Tat - How to One-Up Those E-Mail Scams From Africa (http://news.pacificnews.org/news/view_article.html?article_id=e783f32bbf45fcb37463f 91305796172) I hope a little humor helps :)

locustfurnace
10-07-2003, 12:59 PM
Originally posted by Goslow@Oct 7 2003, 06:05 AM
Not to make light of anyones disability but on the subject of spam I enjoyed the response here Tit for Tat - How to One-Up Those E-Mail Scams From Africa (http://news.pacificnews.org/news/view_article.html?article_id=e783f32bbf45fcb37463f 91305796172) I hope a little humor helps :)
No one is making fun of a disability, but you dont help a cause by spreading it via the spam route. Alot of people will post Spam about disabilites becasue alot of people feel bad and wont point this fact out, they don't want to look mean when they call this poor handicap plea - SPAM.

But really, that is all it is.

Yea, i get alot of the Nigerian scam emails all the time, the part i think is amazing is that people actually think this is real, and send them their banking info, then get ripped off and wonder why.