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    #16
    Agree Pink, and no one should have to go thru their life savings when struck with an illness that needs so many modifications to have better quality of living when there are organizations out there that's sole purpose is to assist, and support those living with mnd

    These organization should not be stingy, especially when people gave so generously with their hearts and pockets to help those living with this illness in monetary donations.

    If this illness is considered rare divide up all those living with it and then calculate the charitable donations that the IBC alone raised, and that includes setting aside money for research. There should be an abundance of money that can be distributed solely to individuals and their families managing this illness everyday and the needs they face.

    The IBC was a fundraiser, where and how where those funds disturbed ? and makes me wonder just how much went into the hands of those that need it? I'm not bashing these organizations and all the wonderful work they do, just questioning why those in need are still left needing ??

    xox

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      #17
      Unfortunately we do not have any savings. If I did I would be able to fund a lot it if myself. The fact we have no savings gives us more stress. We were just starting to live more comfortably and putting a little aside, when this bomb shell was dropped. I agree about the ibc. I understand that quite a few projects were funded with the money, but surely not all of it?

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        #18
        Hi Pink;

        It is very disappointing to have hope and then for it to be refused.

        It is the first thing I ask now , is it means tested and what are the limits. I applied to the Fire Services Benevolent Fund for some contribution towards a new expensive wheelchair, I have not had any help from them for six years. I was then asked to fill in forms, send bank statements, and jump through hoops only to find that any monies are means tested.

        Still, at least it's warm outside for your new wash dry loo, I have a big tent if you want some privacy.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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          #19
          All so very unfair.

          If a person in the US is struck with a serious illness and they don't have health insurance they must first go thru all their life savings and even sell their home before qualifying for 'charity care'.

          If a person has no health insurance, and no life savings, and basically owns nothing they then would qualify for 'charity care' and would receive the medical care needed for free, but only by doctors accepting charity care, but most do not.

          In the US you need and must have health insurance because doing without it could literally cost you your life. Which is why when Obamacare came along so many jumped on it, and lives were saved.

          xox

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            #20
            Ha ha Terry... Yes lovely new toilet but no walls to put round, what will the neighbours think!!
            We are now thinking of releasing some equity from our property but not sure you can if you still have a mortgage on it? My fantastic mother is also looking into it to give me some of my inheritance now while I need it. Going to get these adaptations done one way or another!

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              #21
              It seems strange that you need to release equity yet don't qualify for a grant Pink;

              Ask Mnda connect to have a little look at that.

              Grants can have so many restrictions and take so long, especially if the wrong time of the year and they have no money.

              I guess if you have a small mortgage compared to the house value then you have equity.

              Keep us informed.

              You have got to laugh, they will pay for a special loo but no where to put it!

              Love Terry
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                #22
                Yes our mortgage is small compared to the value of our house. It all comes down to income but do not take into account your outgoings! Alfresco toilet ha ha!!

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                  #23
                  Feel overwhelmed today! My amazing son unbeknown to me set up a crowdfunding page to raise money for my adaptations. Feel a bit embarrassed but he can see me worrying about everything. Friends and his friends have started donating already, £170 already since last night! So what with the race night on Friday which has been organised by a friend, I am feeling really lucky to have such support x

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                    #24
                    How Wonderful !

                    Nothing to be embarrassed about Pink, if we don't help one another who will ? It's in times of need when true friends rise up as they should, and even sometimes from people you would least expect come shining thru

                    Well done to your son, he sounds like a thoughtful, and loving young man.

                    CCxox

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                      #25
                      What a lovely son you must have! That's wonderful news.
                      Good luck!
                      Bern x

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                        #26
                        I am very lucky. I have two amazing sons. My youngest one (26) is slowly coming to terms with it and very protective My oldest one dean, from the beginning has been a great counsellor and motivator x

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                          #27
                          Overwhelmed..... Race night raised nearly £900 and the crowd funding page has reached £600 already. Had a really lovely night. Lots of people turned out for me and caught up with lots of people I haven't seen for a while. One of my son's friends came and told me he'd just organised a charity football match for me! Didn't sleep well, on too much of a high x

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                            #28
                            That's fantastic ! Sounds like you have a lot of love, and support. I hope the fund continues to grow

                            xox

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                              #29
                              You can post a link to the fund here, Pink;

                              Someone might well be looking in that might help, every little bit helps.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment


                                #30
                                Feel a bit cheeky doing that!, Terry !

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