Hello all.
I was just wondering if anyone in Northeast Wisconsin would be interested/willing to help start up a local support group for people with narcolepsy. It has been a dream of mine (no pun intended) since my diagnosis and would like to see it become a reality. Let me know!
Let's Organize! Local Support Group
Started by
Andrea Egan
, Oct 06 2007 07:08 PM
13 replies to this topic
#1
Andrea Egan
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Posted 06 October 2007 - 07:08 PM
#2
Megz36
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Posted 08 October 2007 - 12:59 PM
Hi Andrea!
I support your idea because like you, this has always been a goal of mine. Its often diffucult to do because of the privacy agreements.
I live in Central Minnesota but I would gladly take part in helping you in any way, shape, or form. Thank you for your volunteering efforts!
-Megan
I support your idea because like you, this has always been a goal of mine. Its often diffucult to do because of the privacy agreements.
I live in Central Minnesota but I would gladly take part in helping you in any way, shape, or form. Thank you for your volunteering efforts!
-Megan
#3
nycNURSE
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Posted 08 October 2007 - 07:06 PM
Ditto for me, but in the New York City area. Any students out here?
#4
NannyMissB
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Posted 08 October 2007 - 09:03 PM
I'm just outside of Milwaukee and would definitely be interested in getting something going. I'm about 2 hours south of GB depending on traffic, the weather and my mood.
#5
supercat
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Posted 08 October 2007 - 09:28 PM
I would love to. I live in Michigan.
I was in Minneapolis for the first time in July. What a beautiful city!
I was in Minneapolis for the first time in July. What a beautiful city!
#6
ATampaNarco
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Posted 09 October 2007 - 08:36 AM
We have a great group here in Tampa! Thank to Dr. Scott Perrino. 
:mrgreen:
:mrgreen:
#7
ATampaNarco
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Posted 09 October 2007 - 08:39 AM
Oh Cathy. That quote WAS my famous lines. I would tell that to everybody! I am so tired of being tired! Girl- Look into Xyrem! It is revolutionary! You can always come to Tampa and See Dr. Scott Perrino. He has had patients come from Canada! He listens to his patients. What allot of Dr.'s hardly do today! He cares. I have a friend that is coming to see him from Missouri! Don't be tired anymore!
#8
Andrea Egan
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Posted 09 October 2007 - 12:34 PM
Hello all!
Thanks for all of your replies! I've been thinking of maybe organizing an annual regional support group meeting opposite of the NN Conference (I don't know if anyone is going to that...I am!), so maybe in May (in Madison/Twin Cities)??? I know that would be a lot of work and would probably require some sort of fund raising to secure a conference hall, food, supplies, etc. I think it would definitely be worth it. Let me know what you think and if you have any other ideas.
Some other ideas I had was maybe hosting a benefit run/walk with proceeds going to NN or towards narcolepsy research (we could make t-shirts that would further advocate narcolepsy awareness!). Or have more localized luncheons/picnics for support meetings that would meet more often (once or twice a month, every other month, etc).
To combat privacy restrictions, we could send out brochures to sleep labs/clinics that would provide newly diagnosed narcoleptics with contact information of volunteer "mentors" with narcolepsy who could provide resources for support and encourage them participate/join in our activities.
Basically, I think it would be neat/most effective to organize a regional (Midwest) narcolepsy support group and have different activities going on every month or so in different locations (so everyone would be able to participate as their schedule allows, without having people feel obligated to participate in everything we would do or drop out if they don't feel they aren't active enough members). What do you think? Anyone know where/how to begin?
Thanks for all of your replies! I've been thinking of maybe organizing an annual regional support group meeting opposite of the NN Conference (I don't know if anyone is going to that...I am!), so maybe in May (in Madison/Twin Cities)??? I know that would be a lot of work and would probably require some sort of fund raising to secure a conference hall, food, supplies, etc. I think it would definitely be worth it. Let me know what you think and if you have any other ideas.
Some other ideas I had was maybe hosting a benefit run/walk with proceeds going to NN or towards narcolepsy research (we could make t-shirts that would further advocate narcolepsy awareness!). Or have more localized luncheons/picnics for support meetings that would meet more often (once or twice a month, every other month, etc).
To combat privacy restrictions, we could send out brochures to sleep labs/clinics that would provide newly diagnosed narcoleptics with contact information of volunteer "mentors" with narcolepsy who could provide resources for support and encourage them participate/join in our activities.
Basically, I think it would be neat/most effective to organize a regional (Midwest) narcolepsy support group and have different activities going on every month or so in different locations (so everyone would be able to participate as their schedule allows, without having people feel obligated to participate in everything we would do or drop out if they don't feel they aren't active enough members). What do you think? Anyone know where/how to begin?
#9
Megz36
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Posted 09 October 2007 - 01:08 PM
Omg Those are great ideas! Even tho you're in WI, I would LOVE to help you!! These are the things I've really been wanting to get started! I am Miss Teen Stearns Co and Miss Teen Minnesota 1st runner-up and so I've been involved with a lot of volunteers from all over our state! If you were truly ready to get involved, I would LOVE to help you!!
#10
Marinaki
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Posted 13 October 2007 - 02:25 PM
New York here Eastern Long Island
#11
sleepyavon
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Posted 17 October 2007 - 12:12 AM
Here in North Texas, I would love one! www.myspace.com/rachelrussell
#12
csever01
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Posted 30 October 2007 - 06:39 PM
We are holding support group meeting on November 10 in Minneapolis. Andrea, I would love to have a regional kind of system. I have started a yahoo group about our Minneapolis group.
http://groups.yahoo....p/mspnarcolepsy
There's the link. Maybe we can branch it out and create one for the midwest, too!
Charlie
http://groups.yahoo....p/mspnarcolepsy
There's the link. Maybe we can branch it out and create one for the midwest, too!
Charlie
#13
jan
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Posted 15 November 2007 - 10:39 PM
Support is the only way we make it. I have trouble with getting places and finding space in my confused life. A Support group is a good idea.
#14
Andrea Egan
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Posted 03 December 2007 - 10:38 AM
Charlie, I am disappointed to not have logged into the NN message board in quite some time. It seems like I just got through midterms and now finals are starting to creep up on me. Such is the life of a college student... At least I can (for once) say I've been busy and not mean sleeping! Over Christmas break it is my goal to start working on setting up a support group meeting. I would have liked to attended your group's meeting to kind of get a feeling as to how things are run (and to ask questions!).
Jan, you are from FDL? I am from Ripon (small world)! If you are interested in meeting for dinner sometime, maybe we could collaborate if you are interested in helping me conquest this support group thing. I can bring things I got from the NN Conference in San Diego to share, as well. I love the restaurant "Fusion By Mark" (Bistro) on S. Main St in FDL, and am looking for another excuse to go there (haha). If you are interested, you can message me or something. I hope to "hang around" here more often, although I've learned not to promise such things...
Jan, you are from FDL? I am from Ripon (small world)! If you are interested in meeting for dinner sometime, maybe we could collaborate if you are interested in helping me conquest this support group thing. I can bring things I got from the NN Conference in San Diego to share, as well. I love the restaurant "Fusion By Mark" (Bistro) on S. Main St in FDL, and am looking for another excuse to go there (haha). If you are interested, you can message me or something. I hope to "hang around" here more often, although I've learned not to promise such things...
