Old 03-04-2018, 05:36 PM #1 (permalink)
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Default new treatments

My husband died at age 60 from ALS with FTD in 2008. His brother died a few days ago. he was 66 and he had the same symptoms but was never diagnosed. Are there any new treatments for this?
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Old 03-04-2018, 07:09 PM #2 (permalink)
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Default Re: new treatments

Sadly not in the way of cures. I'm sorry for your loss.
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Old 03-04-2018, 07:52 PM #3 (permalink)
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Default Re: new treatments

The only new treatment available in the US is Radacava. Awesome in a small subset of the study, may extend life by 33%. Only in that small subset. And 33% is about 1 and a half years. Lots of studies going on, some stem cell studies. Sadly, still no cure.
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Old 03-04-2018, 08:31 PM #4 (permalink)
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Default Re: new treatments

If your concern is that it is genetic there is hope. If your bil did indeed have ALS/FTD too the most likely genetic cause is C9orf72. Gene therapy is in the pipeline with three types due to start trials within a year- the first in a couple of months for this. There are others being looked at. There is great hope for the next generation

I am sorry for your losses
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Old 03-04-2018, 11:07 PM #5 (permalink)
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Default Re: new treatments

Judy,

I'm very sorry for your losses. You do not mention if you and your husband had children together, or if your husband had other siblings. If so, you might discuss with them whether they might be interested in enrolling in research to help advance the options Nikki mentions. If they have not been tested for a possible genetic link to ALS, this is one reason to do so. Of course, before undergoing any testing, it would be wise for them to enroll in any life or disability insurance that they might be considering.

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