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Not Much New About N


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#1 nerkie

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Posted 07 November 2011 - 02:46 PM

I was browsing through some info on Narcolepsy and what not, but there's not really much new things out there. It worries me a little. I'd like to reach out to meet people who are like me, to get to know someone who goes through what I go through. But it doesn't seem, at least to me, that much is being done to raise awareness. If that's not true please let me know, as I'd love to support what ever efforts are out there, even if they aren't close to home (I live in southern VA). It's a little depressing to see that, while it is a rare disease, there's nothing new out there. i read articles about N that are over a year old. No new medical studies... not many fundraisers... not much of anything. I want to make this life altering disorder more prevelant in our society. I want people to have at least some clue what Narcolepsy and Cataplexy are without getting a blank stare.

#2 sleepywriter

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Posted 11 November 2011 - 05:01 PM

I was browsing through some info on Narcolepsy and what not, but there's not really much new things out there. It worries me a little. I'd like to reach out to meet people who are like me, to get to know someone who goes through what I go through. But it doesn't seem, at least to me, that much is being done to raise awareness. If that's not true please let me know, as I'd love to support what ever efforts are out there, even if they aren't close to home (I live in southern VA). It's a little depressing to see that, while it is a rare disease, there's nothing new out there. i read articles about N that are over a year old. No new medical studies... not many fundraisers... not much of anything. I want to make this life altering disorder more prevelant in our society. I want people to have at least some clue what Narcolepsy and Cataplexy are without getting a blank stare.



I know what you mean. There were some fascinating studies published in the Sleep and Sleep Disorders Research journal for 2011. The abstracts are easiest to go through and then you can find the full articles if you want to read further.

http://www.journalsl...tsupplement.pdf

I've been trying to find an organization like Wake Up Narcolepsy in my area, but there are none. I'm now on the hunt for people with narcolepsy in my area. I cannot be the only one, yet I have such a difficult time finding anyone else. It's frustrating. We all say we feel alone, but we're not often good at finding others like ourselves.


There are a lot of bloggers out there, so we can at least connect with other narcoleptics online. I can add a list of ones I know of if you're interested.

#3 Kathleen

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Posted 28 November 2011 - 11:56 AM

Narcolepsy Network's Board of Trustees and staff work daily to raise awareness and each one of us can help. I'm so glad to see the blogs and tweets out there! Thank you for doing your part. Many hands make light work. The larger NN becomes the more people will take notice.

Please check with the main office, since when you join NN as a member- you have access to a list of anyone in your area that has agreed to share their information with other NN members. Sometimes you find somebody that lives close and it is pretty cool when you meet somebody else (in person) that shares your struggle.

The NN newsletter does give updates on recent research (if any) as well as other organizations raising funds and awareness. National Sleep Week arrives in the spring- great time to spread the word.

#4 sleepywriter

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Posted 29 November 2011 - 11:10 AM

Narcolepsy Network's Board of Trustees and staff work daily to raise awareness and each one of us can help. I'm so glad to see the blogs and tweets out there! Thank you for doing your part. Many hands make light work. The larger NN becomes the more people will take notice.

Please check with the main office, since when you join NN as a member- you have access to a list of anyone in your area that has agreed to share their information with other NN members. Sometimes you find somebody that lives close and it is pretty cool when you meet somebody else (in person) that shares your struggle.

The NN newsletter does give updates on recent research (if any) as well as other organizations raising funds and awareness. National Sleep Week arrives in the spring- great time to spread the word.



Kathleen, thanks for posting! I appreciate everything NN does to raise awareness. I think what nerkie and I were pointing out is that it's hard to find local movements to get involved with. One question I have for you: I noticed membership runs from January 1 through the end of the year. Can I go ahead and purchase a membership now or should I wait until after the first of the year? Thanks!