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Thanks very much to those who remember ME & CFS causes in their wills

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Nov 25, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks very much to those who remember ME & CFS causes in their wills. I see the ME Association got £355690 in 2015 and £433082 in 2016, both more than donations/fund-raised money combined. The 25% Group got £180000 in 2015-6.

    Together we can make a difference.



    https://www.facebook.com/TomKindlon...41828.656049027876559/933227206825405/?type=3
     
    L'engle, Countrygirl, Cohen2 and 5 others like this.
  2. alex3619

    alex3619 Senior Member

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    This is an easy thing to do. ME causes are not my primary beneficiaries, but if my primary beneficiaries are not going to receive money from my estate then ME causes are next. Even if you do not want them as primary beneficiaries they can still be listed as secondary beneficiaries.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Yes, this is a great thing to do. Maybe we could list here causes to remember in wills and any special instructions that might be necessary. It is great that so much funding came in these two groups from wills, yet at the same time I hope it was from relatives of ME/CFS patients rather than from the wills of the patients themselves--I'm all for using our wills for funding, but hoping that this doesn't indicate early death from the illness. :(
     
  4. Tom Kindlon

    Tom Kindlon Senior Member

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    My impression from helping to run the Irish ME/CFS Association for nearly 22 years including sending sample newsletters to thousands of previous enquirers* is that there aren't many deaths before 60 or even before 70. Know less after that as people's membership does tend to drop off in late life.

    I would guess most bequests are from people with the illness themselves but there are lots of older people with the illness and eventually we all die.

    So figures don't concern me. Also number of individuals may be small e.g. I believe the bequest to the 25% ME Group was from one person. People who don't have much spare money when alive can sometimes have big assets to leave like a property when they pass away.

    *We have got some replies that people have passed away but generally these people seem to be old
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    I am planning to have a will made up to help the people who are sick to live, eat, etc. Honestly, I have no desire to give it to ME or CFS research. I feel it will be wasted. It's been 29 years for me this February coming up. What has changed? I guess Ritux? I want to give it to those who live so poorly. Those who need it NOW. My relatives are not getting it. My friends who are starving will, so they don't have to die waiting for a cure or even treatment. They might not get it (treatment) anyway due to financial circumstances or not having the right insurance.

    Having said that..I may outlive my friends, but I plan on having a will at some point to benefit the poor in my life.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member

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    While research may not have given us as many answers as we would have liked, without what has been done, I think there is a good chance the illness would be seen as purely psychological and something people could conquer themselves. This would have made it even harder to get disability payments and other supports.


    Also to point out that giving money to an ME cause doesn't mean it has to go to research. The money given to the 25% Group won't go to research but supporting their activities such as an advocacy service i.e. advocating for individuals
     
    L'engle likes this.
  7. Tom Kindlon

    Tom Kindlon Senior Member

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  8. Misfit Toy

    Misfit Toy Senior Member

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    I would still prefer to give money to people who are living in cars, have no home and are starving. I see your point, my biggest concern is for the immediate folks who have nowhere to go, no help and who need food, shelter and clothing. They have been abandoned by the system.

    There are plenty of young people who never won SSDI because they were too young to work. They are living on medicaid and no money.
     
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  9. Countrygirl

    Countrygirl Senior Member

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    Now all my close friends as well as my family have died, I have made ME causes my main beneficiary, but I haven't been able to leave my estate as I want. I was hoping that my property, which is in a lovely area close by the sea set in beautiful countryside could be used by people with little money who are sick with ME, to stay for a holiday or even be used as a 'safe house' by Mums whose children are being threatened with forced hospitalisation, but, of course, there is no way of overseeing such a project. I shall be otherwise engaged at that time, of course :p I also found it surprisingly difficult to leave money for biomedical research. It is not as easy as you think!
     
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  10. Jo Best

    Jo Best Senior Member

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    Someone told me this morning that Invest in ME Research is named as a benecificiary in their will.

    Now seeing this thread and looking at their accounts to see how much they receive in legacies, I'm amazed at what they achieve on such a small income. I realise that all their charity work is done by volunteers so no salaries (not that I'd begrudge them if they did invest in staff or support from external agencies) and they are not a longstanding charity having registered in 2006 and not holding large amounts of funds in reserve.

    Their accounts as 'Invest in ME' are still registered on the charity commission site and now also as 'Invest in ME Research' as it shows that they've been transitioning to a new charity format since 2014.
     
  11. Rooney

    Rooney Senior Member

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    Remembering your favorite registered charity (in the US, a 501c3 is the most common type) in your estate planning is so important!

    I've wanted to start a thread about it. It's the most significant form of income for most well-established institutions. As no one plans to be hit by a bus, most people die without a will. In my state I can make a hand-written will. It is a powerful gift. One doesn't have to be rich to make a rich gift

    Don't forget bank account beneficiary designations and life insurance policies. If memory serves, they pass directly outside the will in the US.
     
    Tom Kindlon likes this.

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