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April 5, 2011 by Dan Behne
Comments (3)
Hello to all,
We received a call from a nice woman today who is experiencing vision problems and cannot join spectrum. She will like to talk with someone within the NMO community and asked about a support group. Her area code is 618 (Illinois I believe). If someone will like to talk with her, I will contact her and ask her if it is ok to share her contact information with you.
This is a great opportunity for me to talk about my plans for the support network. This is not to be confused with the wonderful support network that Tim and Gracie started online with Devic’s Support. I will like to start a map, similar to “Connect the Docs” that will include volunteers throughout the country. Everyone on the map will need to volunteer their time and be willing to list their name, phone # and e-mail on the map. This is similar to what Sandy Siegel is doing at the TMA. These people can work with others in the area (NMO supporters, TMA, MSS) to start fundraisers, run/walk events, etc. The events and time allocation will be solely up to you. Caregiver’s are more than welcome to help as well. The Foundation will send these people a small box of GJCF and NMO items to hand out. We can even create a couple of banners that can be passed around from event to event throughout the country.
Please contact me if you will like to participate. As mentioned in our post yesterday, “Ten people who speak make more noise than ten thousand who are silent.” -Napoleon Bonaparte.
This is a large undertaking, so please bear with us while we get it started and implemented.
All the Best,
Dan
Dan I would like to be part of the support network. I know there is a ms support group here in kalamazoo that I've been meaning to check out.
Melody :)
Melody 408 days ago
Ok, I'll try this again because it looks like my post is blank and didn't go through the email (except attached to Julie:s post). Sorry I would be willing to talk with her also. My number is 574-273-0744. I also would be willing to call her so she doesn't have to worry about the cost. I'm in Indiana and not to far from her. Just wanted to offer another friendly person for her to talk to.
Sue Mikalian
Sue 408 days ago
A Rare Approach to a Rare Disease
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Dan, you can give her my number.
Gracie
Grace 408 days ago