How would you spread greater awareness about the terribly misunderstood sleeping disorder Narcolepsy for free?

3 Comments

1. spiderlady632003 says:

   March 26, 2009 at 8:31 pm

   I tried to find her web page but it came up with a message saying page could not be found, and then web site has been blocked. Is she currently building this web page??

   Raising awareness via the Internet is a very good way of spreading awareness and understanding of Narcolepsy.

   Have you thought of having an awareness campaign, via the local health service centre. This would involve having a qualified doctor give a speech, and if your wife is able to give a speech as to how it effects her, or yourself as the husband of a sufferer of Narcolepsy.

   Obviously you would need to have good media coverage, such as T.V and newspaper, also will need some pamphlets to hand out, about Narolepsy, inculding her web site address, and any support groups and important contacts.

   Other suggestions if you have not already done so is to give a Radio interview, again local radio station.
   Or a Television interview either locally or nationally.

   Keep up the great work
2. TechnoMom says:

   March 28, 2009 at 9:01 pm

   Ouch. My daughter I have the narcolepsy/FMS double whammy, as well.

   To start with, I’d move the web page to somewhere other than on MySpace. MySpace pages aren’t taken seriously, and they’re so obnoxious that much of the time, I refuse to even consider visiting one. I know I’m not alone. MySpace appeals to a fairly age-limited population of users, unlike a “normal” domain.

   I wouldn’t delete the current site, of course – but I’d put up a great big notice stating that the Narcolepsy Awareness information has moved to (new address) and work on driving visitors directly to the new site as you get the word out in the future.

   It’s very easy to build a web site on your own domain, rather than using a site like MySpace, and having your own domain name gives the site more credibility. Is narcolepsyawareness.org taken? If it is, try other variations on that sort of theme – but definitely go for a .org domain name, to indicate a non-profit organization.

   Domains and hosting are fairly cheap. Check for a good place to do both. We use them for hosting our family’s sites, and have been very happy. (If you decide to go that route, I can send you a link to use that would give us a referral – every little bit helps, as y’all know, from reading her blog.)

   Another important point is that the awareness site should really be separate from your personal site. Linking to your personal site is fine, but they should be different sites. Music, personal videos, quizzes, etc. go on the personal site. Information about the disease and direct effects of the disease on your life go on the awareness site.

   After the site is up, it’s really time for networking! Answering questions about narcolepsy here on Yahoo!Answers is one good way to make others aware of the site – cite it as the source for the answer in the “Know your source” box part of the answer page. Participating in narcolepsy support groups online is another.

   How do you feel about podcasts? Do you listen to them? Would you and your wife be willing to do an interview on mine, maybe, to “get your feet wet” and get a little exposure for her current site?

   I’d be happy to go into greater detail about or help with any of these steps, if you’re interested. It may seem intimidating to leave something like MySpace at first, but you can do it!
3. david_strickland31 says:

   March 31, 2009 at 5:22 am

   any place on the internet that you can.for this is very important. and i think everyone should be aware of it!!
   and i wish you luck!!
   also you might it on all your friends 360 pages also.
   and maybe they can help you get the word out!!