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Thread: NMSS

  1. #11
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    I have no problem with a CEO making big bucks if it results in large donations due to her skills,

    I do have a problem if MS patients have no family to help out and are not somehow helped by NMSS to get better care and services, and protection from nursing facilities that victimize them through benign neglect.

    I may look into more re what services does NMSS directly provide to patients, and indirectly.
    Last edited by BBS1951; 03-04-2017 at 03:23 AM.

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  3. #12
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    I can not tell you all how much I appreciate these comments. My experience with the MSsociety has been incredibly frustrating for all the reasons mentioned here. People need ramps, equipment, support of all sorts. And the society raises money. But not for direct assistance to people's everyday lives. If not them, then who?
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  5. #13
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    Here is website for MSFoundation. It appears to offer help directly to patients. My iPad is acting up, so it takes a long time for pages to load on this website and many others, but if interested, check them out and tell us what you know.

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  7. #14
    Distinguished Community Member agate's Avatar
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    Link to MS Foundation:

    https://msfocus.org/About-Us

    They seem to be calling themselves MS Focus as well. My impression is that they're oriented more towards helping out in specific situations with practical assistance though the resources are limited and vary from time to time. But they are definitely trying to help individual patients with their individual MS problems.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  9. #15
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    Thanks agate. I forgot to put up the link. What they do is more like what I had THOUGHT NMSS did, but doesn't seem to do.
    Last edited by BBS1951; 03-04-2017 at 09:25 AM.

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  11. #16
    Distinguished Community Member agate's Avatar
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    The MSAA can be a useful resource too:

    http://mymsaa.org/
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  13. #17
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    Quote Originally Posted by BBS1951 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Thanks agate. I forgot to put up the link. What they do is more like what I had THOUGHT NMSS did, but doesn't seem to do.
    When I was diagnosed the Society had support groups here in the western part of my state
    . Several years later the Society abruptly cancelled them all by combining my area into a general category including 3 states! We would have to travel many miles to get to programs they run.

    The Society runs many programs nearer to Boston and surrounding areas but we are forgotten and we have not forgotten. There is not even real effort to inform MSers out here about services we could use. I could go on and on. Raw nerve. I will stop ranting.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  15. #18
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    How self insulated and callous of them.

    I wonder if they get big donations from the pharmas and if so, how much. Also wonder what their criteria are for donating to research.

    As a young woman, I was involved in lobbying legislature on my own time and own money, for changes in a law that impacted children negatively. In my kids school, I also worked hard to correct health hazards at the school and set up after school programs.

    So, it's natural to pursue these issues. With retirement, I can imagine doing something similar about MS, or perhaps a totally diff issue near and dear to my heart and expertise.

    Or not! Could end up just watching waves, cooking and reading. ....
    Last edited by BBS1951; 03-05-2017 at 07:34 AM.

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  17. #19
    Distinguished Community Member jendie's Avatar
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    I got more help from MSAA than NMSS. The only help I ever got from NMSS was coloring books that helped my kids understand MS. My older sons were 5 and 7 when I was finally dx.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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