There's a family in Columbia with a genetic mutation too:

https://www.newscientist.com/article/dn28514-conquistador-br...

There's a weird light discovery that may be helpful in treating alzheimer's.

http://news.mit.edu/2016/visual-stimulation-treatment-alzhei...

60 Minutes recently featured the Columbia-based research. Can't testify to the scientific rigor of the report, but it was very interesting to this layman.

http://www.cbsnews.com/news/60-minutes-alzheimers-disease-me...

Great Radiolab podcast about the MIT discovery -- http://www.radiolab.org/story/bringing-gamma-back/

That was a good podcast, but I was frustrated that they hadn't even tried it yet on humans, as it seemed such a simple experiment. They said they will do it next, but I'd have preferred they waited a few months and then reported it (even if it didn't work on humans).

Well, as far as I can tell, the result only demonstrated a reduction of amyloid plaque in the visual cortex, so an experiment on humans wouldn't really work (you have to kill the subjects and inspect their brains for the current experiment).

if you listen to the podcast, you'll realize that you don't need to do that.

I did... how would you measure the effectiveness of the strobe in humans?

Memory tests, just like with the mice?

My grandmother died of early Alzheimer's and I really don't know whether to get tested or not. It's more than likely genetic but how do you live knowing if it turns out I have the gene.

You can still take steps to mitigate it, which are probably all considered good advice anyway: https://www.alz.org/research/science/alzheimers_prevention_a...

FWIW: this particular gene variant is extremely rare, and explains only a tiny fraction of early-onset Alzheimer's cases. It's not a therapeutically useful test to administer. The point of the article was that the known gene and near-certain likelihoods of developing the disorder among carriers make for a rich, laboratory-like setting for studying the disease progression.

Maybe it's worth it just on the basis that, in the unlikely event that you do have the gene, you may be able to contribute to research into the disease?

The problem is that this is only one known cause, so getting tested and not having that gene doesn't mean you won't get it. Since that gene is pretty rare, I wouldn't see much value in it.

That said, I do understand where you're coming from. My mother also had early-onset Alzheimer's, and it's really scary to know that it could happen to me as well.

> how do you live knowing if it turns out I have the gene. reply

You may be able to make end of life plans in certain countries before onset depending on your desires.

If anybody is interested:

Phase 3 Study of Aducanumab (BIIB037) in Early Alzheimer's Disease https://clinicaltrials.gov/ct2/show/study/NCT02477800?show_l...

Is there a way for people with rare genes to get in contact with researchers? I've always wondered.

I wonder how researchers feel or consider "cold call volunteers". I imagine that on one hand they are grateful but on the other hand mustn't compromise their study; the middle must be some form of personal heartbreak and professional clarity.