Let's Organize! Local Support Group
Posted 06 October 2007 - 07:08 PM
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!
Posted 08 October 2007 - 12:59 PM
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!
Posted 08 October 2007 - 07:06 PM
Posted 08 October 2007 - 09:03 PM
Posted 08 October 2007 - 09:28 PM
I was in Minneapolis for the first time in July. What a beautiful city!
Posted 09 October 2007 - 08:36 AM
Posted 09 October 2007 - 08:39 AM
Posted 09 October 2007 - 12:34 PM
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?
Posted 09 October 2007 - 01:08 PM
Posted 17 October 2007 - 12:12 AM
Posted 30 October 2007 - 06:39 PM
There's the link. Maybe we can branch it out and create one for the midwest, too!
Posted 15 November 2007 - 10:39 PM
Posted 03 December 2007 - 10:38 AM
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...