We, at the Society, want to be a place for people, young and not-so-young, to connect with one another because we know that is how many solutions to life’s challenges can be found. We also want to provide the best information about MS and the resources people need. In a world where the ways people communicate are changing all the time, how can we be relevant to everyone?
How can we be YOUR National MS Society, no matter your age?
Hello Kris, We have often asked for the ability to chat real time on a side of the main page without having to go into a discussion. Sometimes people just want to say hi and want to know who else is here. We also asked to know how many people are at the site right now. Since so many of us are quiet, it would be nice to know how many people are visiting right now. It would be nice to have this page not be stagnant. Some of us wanted to gather and rap about nothing without complications.
Sometimes I am on facebook and I see postings from multiplesclecrosisnewstoday.com and most of their posts ask a question for us to respond to, but make their site so unfriendly like a room filled with shouting people it is great it is not like that here, or they report news with the caveat MIGHT, this might affect ms, this might not affect ms, or it may, like maybe it will rain today. Yes, I know they are for profit and are run by the drug companies et al but it is nice it is not like that here.
What did you have in mind?
Hi Maria1 -- Thanks, as ALWAYS, for the response. I've noted your suggestions. As part of my role here I do research and came across the 1% Rule as it applies to online communities. The rule states that 1% of the visitors are heavy contributors, 9% are intermittent contributors and the other 90% are "lurkers" who read or observe (and most likely appreciate) but do not contribute. Here is a link to my reference article if you're interested: https://www.nngroup.com/articles/participation-inequality/
And, thanks for the insights into what you don't want. That is helpful as well. Plus, you made me smile . . . maybe it will rain today! Kris
Maybe booking some live conversations in person, a little bit of lunch served, to physically connect with fellow citizens of Planet MS. Some of the live events I've gone to have been sponsored by drug companies (with a clear advertising angle) but something sponsored by the MSAA could be free of ads and full of info about the numerous options out there.
Linking up with advocates by e-mail could be cool as well. This website is cool as well; please keep up the good work.
Thanks jennifer_m for the reply and kudos. :-) We do have a tool on the National MS Society website that enables people to search for support groups in their areas? Is that what you mean? If so, the link is here: https://www.nationalmssociety.org/Resources-Support/Calendar-of-Programs-and-Events?catids=0&m=11&y=2019&zip=
Hello Kris, i think you have unleashed the monster in me, I now have no excuse to keep my mouth shut. maria
Isn't it nice to know that at least in one area of your life you ARE the 1%? ;-)
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