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Donna
Unregistered User
(12/22/02 1:56 pm)
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Subj: Lanie and Rare Classification by Donna - entered by C
Subj: Re: [Fibromuscular_Dysplasia] RE: LANIE AND RARE CLASSIFICATION
Date: 12/22/02 7:41:35 AM Eastern Standard Time

From: donnasutliff@hotmail.com

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Good Morning,

I agree debate is healthy, and I worked for so long in an office doing research, and I believe if your going to have a FMD Organization you need to be organized, and I think we are on the right track. Someone asked how do you get money, you get money from sponsers, also eventually there will be chapters that come from the main organization, these chapters will be in different states, where people can have meetings, they raise money, by having rummage sales, and banquets, there are so many ways. It is a lot of work it is not a overnight process. When everything is organized and set up you will see how it all comes togather. eventually everyone will see why you want to join Nord.

First place I looked when I found I had FMD was the March of Dimes, I called them and they sent me pamplets, also they sent me information on Marfan's also, and at the bottom of the Marfan's information sheet there was a phone number to call for additional information. On the FMD information sheet there was no phone number just a Xerox copy from a medical book. The difference was that the Marfan's, was internationaly organized and there wasn't anything for fibromuscular dysplasia. That was in 1997, and there it is the same information as it was back than, there is nothing new, look at the information on the web most of it is old information, and even if it does say 2002, it still says the same thing. I am not trying to sponser anyone, I want help for my children, and my children's children, and your children, and other families, I am 56 years old and the thought of this disease scares me, because I know I have it, and I don't want it, but since I am stuck with it, that is why I am here. and I am talking to all of you, and if it is debating well I am doing it, but I want to tell all of you to have a "Merry Christmas and a Happy New Year", and be careful out ther, I live in the north so it is suppose to be snow for Christmas and for about ten days, so Yvonne, maybe the heat isn't that bad, I can hear the wind blowing here in my house.

Donna


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