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Narcoleptic Foundations?

Posted by seabrooke on August 08, 2005 at 22:13:20:

This is a very serious posting I'm placing here on this forum. This is something I have given great thought to and I'm still lost over the whole thing.

Do we have a national foundation for narcolepsy here in Canada? I have read an articale on the internet about how there use to be one but it doesn't exsist anymore. Can anyone help me out on this if you have any knowledge or information concerning this?

There are so many foundations out there for other health problems in which any individual can contact for any reasons concerning their illness. MS for an example has a national foundation that raises awareness, donations towards research, etc...

Alot of times people who need help for their illness can turn to a foundation either for help, support, information concerning their illness or their rights in the work force, obtaining ethical and appropraite health care, etc... Sometimes these foundations/associations can obtain great power in influencing government for those having problems obtaining partail or full disability for those having problems in doing so. Or if a patient is not obtaining the appropraite medical care needed for their illness some foundations/associations can play much influence on doctors.

Some of these foundations/assciations will aid an individual start their on association in the region where they live etc...

The point is that I am able and willing to start or play an active role in a narcolepsy association here in Quebec but to my knowledge we have no such thing here in this province. I do know that they have some foundations/asscoitions in the United States and the U.K. for narcolepsy but nothing that really pulls alot of wieght around.

If we do have such a thing in Canada for narcolepsy are they equiped, able and willing to help those like myself that would like to start something like this in Quebec?

Support groups are fine in those areas that have them but they don't pull much influence or weight around in aiding narcoleptics. What we need is a real foundation or something in this country other then just making pretty web sites about narcolepsy!!!

Think about it. I have seen stats that claim that their are roughly just as many poeple with MS as their are with narcolepsy however narcolepsy doesn't have national foundations in some countries and if they did how can you compare their involvement in public awareness of this illness compared to MS foundations? So making the excuse that their aren't enough narcoleptics to bring public awareness in fighting this illness such as making donations then how do you explain how these MS foundations have been able to do so? Something here just doesn't add up!

We have national fund raising events such as "walk for MS" but how many times have we've seen "walk for narcolepsy" taking place? Is it because narcolepsy isn't as serious or disabiling of a disease as we believe it to be??? (Just to let you know that I'm not comparing the disabiling effect of MS to narcolepsy. I'm simply making a point.)

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