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#1 sd4

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Posted 05 November 2007 - 06:17 PM



Need to get the word out. Only 2 entries since opening!
Thanks


#2 NBI

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Posted 13 December 2007 - 09:59 PM

What is the members only section? I thought it was for members of NN, and after I registered for the forums, I found I was denied the ability to register for that sector. Can you enlighten me please ? smile.gif

Thanks, Suzzanne

#3 Guest_NarcNetwork_*

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Posted 15 December 2007 - 05:45 AM

Dear Suzanne:

The meaning of the word 'member' varies from one web site to another.

Narcolepsy Network is a nonprofit membership organization with a real-world presence as well as a website. We use the term 'members' to refer to individuals, professionals and sleep centers who have paid annual dues for the current calendar year.

If you are a dues-paying member, you may gain access to the Members-only area by sending your full name and address and the User Name you registered for the Message Board to info@narcolepsynetwork.org. Once we have verified that you are a current dues-paying member, we will enable your User Name for access to the Members-only area.

Narcolepsy Network offers free mailing list subscriptiion and message board participation to all visitors to our website, regardless of membership status. We refer to these groups as 'mailing list subscribers' and 'Message Board users', respectively.

We encourage all people with narcolepsy to become dues-paying members so they may 1) receive our informative quarterly newsletter and take advantage of other member benefits and 2) help support the work we do. We are only as strong as the number of people actively supporting our cause through membership.

Narcolepsy Network

#4 Mirianda

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Posted 12 November 2009 - 04:40 PM

Well I would be a paying member to help out the association BUT THEY DON'T ACCEPT CANADIANS and since here in Canada there's no organizations about narcolepsy well I am trying to build one. It's a lot of work so slow going cuz I work full time take school part time. But I'm still unhappy about the fact that I can't register :(

#5 Kathleen

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Posted 13 November 2009 - 10:08 AM

Well I would be a paying member to help out the association BUT THEY DON'T ACCEPT CANADIANS and since here in Canada there's no organizations about narcolepsy well I am trying to build one. It's a lot of work so slow going cuz I work full time take school part time. But I'm still unhappy about the fact that I can't register :(


I just checked with the main office, the only requirement is to pay in US dollars. I have uploaded the membership form if you are interested. We do have some members in Canada, not a ton but a few current ones.

I looked at the shopping cart on the main website, I am sorry, maybe it is not set up for international orders. I am not 100% positive, but I thought if you use a credit card online, the charges will be converted to the US Dollar. But of course, if the website shopping cart is not set up to accept international orders, I can see why that would be frustrating.

Nevertheless, I am glad that you are posting here & welcome your participation!
:)

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#6 Mirianda

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Posted 13 November 2009 - 10:30 AM

I just checked with the main office, the only requirement is to pay in US dollars. I have uploaded the membership form if you are interested. We do have some members in Canada, not a ton but a few current ones.

I looked at the shopping cart on the main website, I am sorry, maybe it is not set up for international orders. I am not 100% positive, but I thought if you use a credit card online, the charges will be converted to the US Dollar. But of course, if the website shopping cart is not set up to accept international orders, I can see why that would be frustrating.

Nevertheless, I am glad that you are posting here & welcome your participation!
:)


Thanks for the info! But I wanted to do it online *sniff sniff* I'll manage. I guess I'll have to call! *I hate phones!* But I love internet!! ♥ Cuz what was worrying me was the clause that said "you have to be a US resident :huh:"

here is the link that discouraged me NN

#7 sleepless sleeper

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Posted 16 November 2009 - 01:41 PM

I don't think that the majority of paying members are going to post stuff that non-members cannot access or respond to. It limits our ability to share/communicate.

I think this is ridiculous, and I would never do this to my fellow pwn. What exactly are you going to provide here that is so exclusive? I'm a paid member, but I don't think the benefits are worth it other than supporting NN. Doing this only furthers my belief.

#8 Mirianda

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Posted 16 November 2009 - 01:50 PM

I don't think that the majority of paying members are going to post stuff that non-members cannot access or respond to. It limits our ability to share/communicate.

I think this is ridiculous, and I would never do this to my fellow pwn. What exactly are you going to provide here that is so exclusive? I'm a paid member, but I don't think the benefits are worth it other than supporting NN. Doing this only furthers my belief.


Only thing I was trying to say was I would be glad to be a paying member in that way I could do a little support (financial) to the network. I am not really exclusive (probably far from it, I got a lot to learn) but I do want to help out here in Canada and I would appreciate to have the newsletter. I probably should work on my english more I seem to have difficulty to clearly state what I mean :(

#9 sleepless sleeper

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Posted 16 November 2009 - 01:58 PM

Mirianda, hon, this is in no way pointed toward you. My comment is to whoever created this exclusive section.

#10 AssociatedWithFire

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Posted 25 December 2009 - 06:21 PM

I think haveing to pay for any help(N. materials) or access to ANY part of the site run by this "non profit orginization" is complete CRAP! I have been a lowly plain unpaid user for a long time now. I wish to christ I could pay for this friggen membership so I could get the print materials. My life has turned to complete crap because of narcolepsy and worst of all i live in such a backwoods area they dont even know what it is a the god damned hospitol!!! the friggen docter looked it up on friggen wikipidia to confront me with his dissbeliefs and I had no ability to defend myself cause the insanity of it all shut my brain down as per usuall, and oh... because Im too poor i had no print materials to show either. Ive lost my wife because she doesnt believe I have N and she took my 2 daughters with her. She put a restraining order against me cause she says because I have narcolepsy I am a danger to my kids because im unpridictable with my staying awake and being moody wich scares her ( i have Cat pretty bad, to the point ANY spike in emotion triggers it) Ive lost my buisness and Im being evicted from my home. I have lost everything I hold dear in this world. I will be homeless in two weeks. I went to social services here in sullivan county Ny and they litteraly told me there was nothing they could do to help me. they actually got mad at me when i begged YES I SAID BEGGED!for HELP! I no longer have the ability to simply take care of myself. I have gone from being a environmental biotechnition and radiant heating engineer to a helpless invalid whom nobody could give two poops about. My life is over. I have litterly lost everything I have including my friggen health. Its christmas and My narcolepsy makes me too dangerous to see my kids! :( In two weeks I am going to hitchhike down to NY city. at least ill be homless in an area where us dangerous freaks who cant stay awake can blend right in.

In conclusion to my pity party for one, I feel to require paid membership for access to a site and to very important printed material (some of us need any help we can get even if it is a small leaflet it helps explain narcolepsy to others when we...I lose the ability to) that could very well save someones life is un-ethical and dishonorable and you should feel ashamed of your selves. for the love of pete you could ask for donations or at the very least, being all non-for profit and everything sponser loser narcoleptic like myself so we might stand a chance in maintaing a shred of decency when told we need to try harder to stay awake by a god damned docter and not get as my absentee wife describes it moody by being told things like this. AAAAAAAHHHHHHHHHHHH!

#11 axe

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Posted 26 December 2009 - 02:24 AM

Hi AssociatedWithFire,

Narcolepsy Network is a Non-Profit Organization. That is a tax status that means we do not make a profit and serve a public or charitable function. We serve our members and provide services like this forum to help others. I can not read every post that comes in here and intrude into the private lives of the participants every time someone posts about a problem no matter how serious or trivial it may be. If I did I would get a reputation for butting into everyone's business and no one would want to post here anymore.

As for the members only section, it is intended to have things on it that pertain to the organization itself such as Bylaws, Policies and Proceedures, Financial Reports, and discussions about the operation of the organization. Anyone who posts in members only about the sorts of things that are in the public portion of the forum is doing themselves a disserevice and is likely to be asked to move the post to the public area.

If you do need help beyond what you can get by posting here you should ask for it. Our office gets frequent requests for help from members and nonmembers. Most of those inquiries are handled successfully. I know this, I am one of the people who is privilidged to answer some of the difficult cases. We do have some free materials and some materials for which we charge a fee. It costs us to create them, print them, answer the phone (e-mail, etc.) and mail them out. We do have paid positions for certain professional services and pay for some NN related expenses of volunteers like me. This comes from the dues our members pay, donations and grants.

Your recent adventure with the mental health system is not one I envy. I have heard of rational and reasonable people having gotten into similar circumstances and having difficulty convincing the doctors that they do not belong there. I do not know all of the circumstances surrounding the episode so I reserve judgement. I would, however, tend to side with you. Narcolepsy is so uncommon that many medical professionals do not have the experience to understand and deal with it. There is little excuse though for a doctor not taking a thorough medical history. Increasing public and professional awareness and understanding are part of Narcolepsy Network's goals.

I am sorry to hear that you are having a hard time in your personal life. It seems unfair, you feel betrayed by people who prommised to love you and stand by you in good times and bad. This is one of the bad times and it seems like your parents and your wife are not only not on your side but even causing some of the pain. I do not know what I would do if I could not rely on family to understand and help me. I would go out of my mind if the law told me that I could not see my grand kids because narcolepsy made me unsafe to be around them. Do our symptoms make us unsafe? Sometimes yes, they do but not always. It is more like we become unreliable because sleepiness and cataplexy are not predictable. Reported moodiness because of sleepiness is another matter. You might find professional counseling and couples counseling helpful. You have to find ways to make the situation safe for the people you love. Yours does not seem to be a circumstance where you are accused of assaulting your wife or children, only that your wife fears for what you may do when you are having a bad day. Lots of people in similar circumstances find it necessary to have supervised visitation. It is probably not what you would like but you will at least get to see and interact with your children which is important for all of you.

I hope that this clears up any misunderstandings. I want to know if we are having problems and encourage participants to let me know if somethig seems amiss so I can make it right.

I want you to succeed, thrive and flourish. If you need additional help, especially of a more private nature, please e-mail through narnet@narcolepsynetwork.org

Sleep well,
Live better,

Ramon Werbeach
Presiding Member,
Website Committee
Member, Board of Trustees
Narcolepsy Network

P.S. This is a family forum and I do not want someone using course language around my grandmother, mother, wife, children or grandchildren. I hope you feel the same. Please watch the language. RW