Best ME causes to leave to in a will?

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So after 30 years of ME and not much in the way of exercise, I'm not sure my ticker's in it's best shape these days, and giving a warning or two out, so I'm looking to leave a will.

So which do you think are the best ME causes to leave to? I think I'd be more inclined to want to donate to scientific research. But needs to be something permanent, probably a registered charity, as obviously updating a will can get expensive, so crowdfunders and like are out.

Any thoughts?
 

Pyrrhus

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Alvin2

The good news is patients don't die the bad news..
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You could leave some money to David Tuller, perhaps a trust that donates to him every year and if he retires then another ME charity?
 

jaybee00

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Open Medicine Foundation is your best bet. David Tuller won’t cure anyone. Polybio features Amy Proal who writes poor quality review articles, and doesn’t have a lab or any academic affiliation—I recommend avoiding.
 

lenora

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Yes, a place to send donations of the brain and spinal cord would be excellent. Often samples are only needed, so many facilities can use them for different studies. I feel this is where I want to send my remains when the time comes.

@Pyrrhus has helped to make a list of places that accept such "offerings." As I've found out this is harder to do than one thinks. Arrangements have been made ahead of time and my family knows. Whether the samples are used for the proper thing would be completely out of my hands and those of my family. This is a shortcoming that people are working on.

All of us should be prepared with Wills, Foundations involved (if we want) and the like. I first started doing this when I was quite young...so it's just to have it in case of emergency since we don't know what tomorrow may bring for any of us (and that includes basic accidents).

Congratulations on your forward thinking. It can be upsetting as you make arrangements, but once they're over it's life back to normal as usual. I realized the importance of this when my husband suffered two cardiac arrests on the same day (with CA you're generally dead right away...it's different than a heart attack). We immediately made all arrangements then and have continued to change them as life has changed and our daughters have become older. It's a good plan....just like paying your insurance.

I did not respect (or like) the way organ transplantation was handled in Rod's case. Truly, they were like vultures and it was only with one daughter telling them to actually do something for her father instead of waiting for his death that they stopped pressuring us. (They're a different team, anyway.) I'm in favor of organ donation, but strongly feel that it's the family's decision and they should be present before the decision is made. This other is scary and gives the program a bad name....there is a lot of money made in organ transplantation.

Yes, of course I would have donated, but all of us, including friends present changed their drivers' licenses that day. We've lost family members who could have benefited from transplantation, so we were exactly what they needed....until their performance belied them. Most organs can be used if kept on life support anyway....some can always be harvested.

For us to make our own arrangements is a lasting gift to our families. We try to keep them updated, everything is listed and it's up to them to keep the info in a safe place. Good for you. Yours Lenora.
 
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Thanks for the replies. Will look into your suggestions. Donating my organs, that's an interesting one. Can you specify that in a will?
 
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I get lots of exercise. I'm lying in bed in the middle of the day, but my watch says my HR is 140 so I must be doing some high intensity exercise. Probably getting close to marathon shape.

:(
Oh yeah, I know that one. I don't think I ever go below 100 bpm. Makes you wonder what age our hearts now are. :O
 
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Thanks for the replies. Will look into your suggestions. Donating my organs, that's an interesting one. Can you specify that in a will?
Actually I got my answer in the link. My bad. I tend to think of wills as being about money and assets, but I guess they can be about lots of things.

I'm in the UK, so anyone know how to get in touch with Dr Shepherd or Dr Chaudhuri to see if they're interested?
 

lenora

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Hello Da Funk....I don't know about the UK, but the most common way here for people to OK organ donation is on their driver's licenses. That is considered acceptable in most cases of accidental death when the family isn't present.

I swear that on that day if I hadn't been following immediately behind, my husband's organs would have been harvested. Like I said, I'm not against it...am actually in favor of it, but the family should have every opportunity to make the final decision. It was interesting to see all of it fall into action. So yes, your Will, telling your family and making changes to your license are all ways to ensure your final wishes. Really, the best way is telling your family and letting them handle it with your directions in writing.

We've also gone the other way: About 2-3 yrs. ago I almost died and my husband had my Do Not Resuscitate Form in his pocket. These are kept in the refrigerator along with a list of meds (provided by the local fire dept.), insurance info....easily grabbed on the way out the door. The doctor took one look at the form (signed by a lawyer) and that was it. It saves loved ones a lot of hard decision making and they aren't left feeling guilty...our wishes are known.

Life's circumstances dictate that Wills or wishes be conveyed to our families as time passes. Yours, Lenora.