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    Muckfest ms

    Would you like to watch a video which shows what our NMSS has planned for a fundraiser this year?

    Only registered and activated users can see links., Click Here To Register...

    Someone in the National Multiple Sclerosis Society office is getting paid to come up with a fundraising activity for the year.... it's coming to a city near where you live and it doesn't matter if it's raining or not! Uggggg! Disgusting!!!! Does this take the place of the MS Walk or the MS Bike?

    Gabriella
    Last edited by Gabriella7; 01-20-2013, 08:17 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

    #2
    I'm sure it won't replace either the walk, the bike, the gala dinners or cocktail parties etc, etc.

    It looks like the brainchild of a young fundraiser or fundraisers who are targeting
    those who are sympatico with the MS in children, teens, younger adults and MS'ers.

    Do the ends justify the means? Does the NMSS spend it's donations in a manner
    most beneficial to all those w/MS?
    It depends upon the chapter.

    Donations made to the NMSS in my mom's memory were not made to my regional chapter.
    I instructed they be donated to a chapter in a different state that had helped me tremendously
    and also had a very good rating on Charity Navigator.

    IMO, the biggest failure of the fundraiser is to not acknowledge those with the disease.
    The promotion for this fundraising event has nothing to do with me.
    Shoot, it's like a beer commercial without the beer and hot cars.

    Put me on the sidelines in a wheelchair with a tank top and a tall cool one, laughing
    with people of different ages and perhaps I would feel included.
    Throw me in the mud and raise me like Icarus!!!
    Instead, I feel used for the benefit of maintaining an health organization that denies
    solidarity even with people who use a cane.

    Off subject- Today I have to juggle AAA, a flat tire in cold weather, snowfall, an open or closed garage?
    and a wealthy city that cries broke when it comes to good snow removal.
    I am a reticent Maestro from my wheelchair.

    May good samaritans step in when we really need help.
    Last edited by renee; 01-21-2013, 01:43 AM.

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      #3
      Off subject- Today I have to juggle AAA, a flat tire in cold weather, snowfall, an open or closed garage?
      and a wealthy city that cries broke when it comes to good snow removal.
      And just where is the MS Society while you're trying to cope with this?

      I haven't noticed the MS Society addressing itself very much to the everyday concerns of people trying to live with MS year after year. They want research and more research.

      That's probably good. Maybe someone will come up with some good ideas or answers. But it's too bad that people with MS have to live with it for many decades--the rest of their lives, actually--without much assistance from service organizations, though there are the MS Foundation and the MS Association of America, and other organizations in other countries.

      This mud idea seems to be popular lately. A year or so ago I heard of an MS Society "mud run" somebody was doing.

      The Muck Fest video is difficult to watch, or at least I found it very bothersome. It hurt my eyes and made me feel a little dizzy.

      Anyone else have a problem like that with it? But thank you, Gabriella, for letting us see what's going on.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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        #4
        I agree whole heartedly with you Agate and Renee.

        Love
        Attached Files
        Last edited by SalpalSally; 01-21-2013, 07:05 PM.
        Love, Sally


        "The best way out is always through". Robert Frost






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          #5
          Just curious but exactly WHO gets all the money raised? research by big pharm would be my guess. the annual bike run seems to be more of a social thing for bicyclists in my area than anything else. maybe I'm just ignorant?know I'm cynical-sorry!

          Comment


            #6
            Gabriella, thanks for posting this, however I think I'll pass on donating. Forgive me for again being jaded, but I couldn't connect all that to MS at all. While most of us cannot ride a bike or do one of their walks it is still better than this. How do the people become aware of what MS really is? Or maybe no one wants to know what it really is like.

            I agree with Agate, where are they when people need help with things like Renee and her flat tire. By the way, Renee I hope it was not too bad. It is so cold here today. I doubt that it has gotten out of the 40s, so if you are dealing in weather like this it is hard.

            Well, just because "mud muck" does not appeal to me, I still hope they raise some money. If they would just do something for the people suffering with the disease that would also be really nice.
            Virginia

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              #7
              Buttons2, the MS Society funds research on its own. In fact, those studies funded by the MS Society are among the more trustworthy ones precisely because they don't seem to have much of a tie-in with the drug companies.

              Nowadays most studies you look at have to reveal their funding sources. Sometimes you have to look around a while to find that information but it's there.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

              Comment


                #8
                Participation

                In the past, I along with a few other MS friends who are not able to walk but do ride power chairs, scooters, and even manual wheelchairs with assistance have participated in the MS Walk in our town. Participants also bring their dogs to walk and a lot of volunteers help. A T-shirt can be had for a $100. contribution which one of my friends always purchased. Lots of tables set up with information about MS and entertainment for all who come out to the town square. It is an event that is uplifting and informational even for those of us with MS. I can't say the same about this event because I don't see where PwMS could participate.

                Maybe, I am also getting cynical but to me it just looks demeaning but if it raises a lot of money for scientific research and finds a cure I'll shut my mouth! However, I'm certain that it will cost a lot of money to pay to put on this event while the other events probably don't have as much overhead up front. I too would like to see the local chapter provide more practical support for us MS'ers.

                I hope this event doesn't take away from the yearly MS walk nor the MS bike event. Those are first-class events with great participation and support.

                Gabriella
                Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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