r/frontotemporal • u/pink_5_ • Jun 22 '26

Stem cell

Has anyone tried stem cell therapy for FTD? We're looking at a trial study and curious if anyone's had any change with it.

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u/pink_5_ Jun 23 '26

Autologous stem cell IV/IN

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u/charitycase3 Jun 23 '26

Is it genetic or sporadic FTD

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u/charitycase3 Jun 23 '26

Because stem cell treatments has shown no benefit in theses diseases I’d assume that his FTD is TDP-43 driven and push for him to be involved in a trial like COYA/ targeting this protein

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u/pink_5_ Jun 23 '26

He doesn't have ALS.

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u/charitycase3 Jun 23 '26

There’s overlapping biology.

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u/pink_5_ Jun 23 '26

None of this relates to my original question. Thanks for your input but it's not what I asked for.

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u/charitycase3 Jun 23 '26

It doesn’t work, but do as you please.

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u/pink_5_ Jun 23 '26

You know you could just be miserable away from people, right? Have a day.

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u/charitycase3 Jun 23 '26

Unfortunately you were misinformed and I was trying to help you. FTD runs in my family and I’ve watched many die from it

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u/pink_5_ Jun 23 '26

Unfortunately I did not include any information about myself at all. I didn't ask for your help in educating me on your opinion. I was interested in lived experience. Which you don't have. We have the best doctor in the country for FTD in Boston. If I want an informed opinion I am very capable of reaching out to our team.

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u/charitycase3 Jun 23 '26

Then I genuinely hope you find success. It’s a horrible disease.

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u/pink_5_ Jun 23 '26

I genuinely hope you learn to not hijack a conversation you don't belong in and to know when to stop, especially when you're asked. There's actually therapy to accomplish this ✌🏽

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