Jimmy Kimmel Supports ALS research

Sep 05, 2019 10:31

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One of his staff members was diagnosed.
He's trying to raise money and awareness.
Offering a VIP guest trip/paid for/portrait painting as sweepstakes to raise money.

Source

charity, jimmy kimmel

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numbedtoe September 5 2019, 19:35:20 UTC
I think it's a very personal choice to make. VERY. because yes we know the odds on it, especially when it's familial. but in families without huntingtons, well, i don't see too damn many folks opting out of having kids just because everyone dies of cancer at 70+, or heart problems. none of us are going to make it out of this life alive, and there are probably no good reasons when you look solely at genetics for anyone to have kids. and i'm very pro people having kids if they are going to be good parents, and us living our lives in spite of this world and all it's bullshit. genetic testing would have told you my mom should have had a dozen kids, but i got hit with some of the worst auto immune shit around. /shrug. luck of the draw i guess.

On that side though, which they are family to me, but not blood relations since the huntingtons is in the inlaws. whole family going back like 4 generations, so doctors actively research them. everyone got tested, well, almost everyone, I think there are just the 2 who didn't. Anyone who was a carrier got sterilized after turning 18 thinking ok, we're going to stamp it out. 5 out of 6 boys have the genes where they will get it, it's a matter of time. 3 of the boys held a 3 day party over a long weekend (food coma and hangover city) and monday morning went in and got snipped together. one, he did have one child before he knew, and before the testing became so prominent. He knows what's coming for himself and won't discuss it much. it usually kicks in about 40-45 for them, a few at 30, but most 40s and he's said he plans on killing himself when he starts to show symptoms. that's the general feeling in the family. some have done it. some haven't. my cousin with ALS, she did. She held a big shin dig over a weekend, and sunday night went to sleep, going on her own terms after ALS had taken a lot and she knew it was only going to get worse.

one of the huntingtons girls though, she's an argument for why we need to be careful about genetic testing. she had it done, found out she was a carrier. she also had 3 kids. she couldn't stand the guilt that she might make them die and she killed herself. she was 50 when she'd gotten tested, and did so ahead of her kids. out of her 3, only one got tested, the other two couldn't handle the idea after how their mom died. especially when the one came up negative.

So IMO, I think genetic testing for Huntingtons can be great when everyone understands the score, that nobody did this purposefully, and that yeah you try and live your best life knowing you are a time bomb, and if the genetic councilors truly follow through with the aftercare, since i've seen times they have not. i think they need to evaluate if someone can handle it mentally to even have the testing done in the first place instead of putting medical research ahead of it. like they are supposed to.

but i absolutely understand why someone might not want to know if their life is going to be over and ruined by a certain age. especially in a society that tells us we are fucked if we are sick, and gofundme drives are more dystopian nightmare than feel good story of how strangers paid for someone's medical treatments.

And I'm very nervous towards the idea of the medical community deciding that they should just go ahead and sterilize people for their own "good", and the "good of the gene pool" when we have seen historically many nations who have done just that, and for reasons that were pretty fucked up and unnecessary. my icon aside, I do have some very real concerns towards how genetic testing will be used against people for insurance purposes, as well as medicine run amuck.

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u_know September 6 2019, 19:06:49 UTC
Jfc that's so sad. I honestly don't know what I would do in that situation, if I had a parent with Huntington's and had to get tested, would I? It's not like being tested for BRCA and then having your breasts or ovaries removed, in the hopes of avoiding it. You can't really avoid Huntington's and neurodegenerative disorders are honestly terrible. It's like that whole "would you want to know when you're going to die or how you're going to die"? But almost like they get to know both at the same time, so fucked up :(

Also 1000000% agree about the medical community deciding who should and shouldn't sterilize. I can see that going into eugenics territory in a hot second, and no fucking thank you. People can decide for themselves what they're going to do.

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