Genetic genealogy raw data and Alzheimer's research ...

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J11
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Re: Genetic genealogy raw data and Alzheimer's research ...

Post by J11 »

Wow!! This is exciting!

I had not been on our 23andme account for quite some time.
I had not realized how many more people have caught onto the wave of genotyping.
Basically, at this point you must be living in a cave or something not to get that we are all moving into a big global database in which all of humanity is roughly a cousin of some sort.

How will global conflict even be possible in the 21st Century with this knowledge?
Some of even my closish extended relatives who had combat experience did not appear to have any realization
that the nations that they were battling were in fact part of their extended family.

There are now a great number of high quality matches available that will let me assess the putative variant of interest. This is very exciting. When I look back on a download csv file from a few years back there were no relatives listed on the segment of interest. Now there are ~10 high quality matches on 23 and me alone. Most of the other big genomics sites also have large number of good matches.

This becomes all the more powerful when you add in Geni World Family Tree. The World Family Tree (also Big Tree) could let me take a bird's eye view of the extended family and possibly line up where this mutation started from. This is a startlingly powerful tool. I am not totally sure yet about how this actually works yet. I do not want to link up the World Tree, though Geni might require this in order to access the Big Tree. Any comments would be greatly appreciated.

There is clearly a network effect happening here as more and more people get on board the genotyping wagon and the software gets better and better. Things are really starting to move forward. I would have liked to have been a little bit closer to the start of the wave though it is a great deal easier to get somewhat behind the curve and just ride the momentum.
circular
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Re: Genetic genealogy raw data and Alzheimer's research ...

Post by circular »

J11 wrote:Wow!! This is exciting! ...
Keep up the good work J11! I can't digest it all at this time, but some day I hope to sit and really scour your posts. If you ever have the time, inclination and talent to create videos of the various processes for those of us who are more 'visual learners', that would be great (but slow you up I realize :( )

I'm sure you're aware that the idea of using genetic genealogy tools assumed to be used only for cousin matching -- ie, not health matching -- will meet with a lot of resistance (and support) in the genetic genealogy community; ie, with success major, heated debates could ensue all over the internet, at conferences and the like. I think it will be similar to those spurred by law enforcement using some of these tools, which has gradually, and not without a lot of battle scars, settled into users knowing where they can opt in or opt out of that. That's not a personal position on either topic one way or the other but a heads up. It will likely not be news to you but may interfere with your plan some.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
J11
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Re: Genetic genealogy raw data and Alzheimer's research ...

Post by J11 »

circ, thank you for replying!
Very very exciting.
It continues to look quite promising.
I have had two early responses and neither suggest that this is a wrong turn.

This has been a great adventure and I think I might finally have made some progress.
I am glad that I have kept something of a log of this journey because often there is a certain revisionism that happens when recounting stories that while typically making the plot line more coherent is not exactly true to life. As they often say, you really can't make up the sorts of odd twists and turns that happen out here in reality. People wouldn't believe you!

So just to update things a little bit I have taken somewhat of a multi-month getaway to a warm tropical island type vacation (or at least in my imagination). Slugging it away out there in reality was tough. With the wave of technology and the enormous numbers of people who are genotyping I had guessed that my search would be exponentially easier when my genetic extended family grew in the databases; that appears to have been quite true.

I have had a few nibbles and i know that whenever I want to shift it up to a higher gear all I need to do is start mass emailing. A fairly strange and unexpected response I have received from one of my genetic contacts who I was at least somewhat sure has the genetic risk variant is that they did not want to investigate this further. I thought it the ethical thing to do to request their consent to disclose more about what I know to them. I thought that this would be a formality. No? It is difficult to imagine. Part of their thinking is that Alzheimer's is untreatable so why bother even learning more. I am not sure how much I should push this but our family's specific type of dementia might actually be treatable. The initial research appears to have some leads on how this particular manifestation of illness could be treated. So many people have bought into a fatalism that there is nothing that can be done, there is nothing that they can do, even when there might be something that they could do.
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floramaria
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Re: Genetic genealogy raw data and Alzheimer's research ...

Post by floramaria »

J11 wrote:This has been a great adventure and I think I might finally have made some progress......
Part of their thinking is that Alzheimer's is untreatable so why bother even learning more. I am not sure how much I should push this but our family's specific type of dementia might actually be treatable. The initial research appears to have some leads on how this particular manifestation of illness could be treated. So many people have bought into a fatalism that there is nothing that can be done, there is nothing that they can do, even when there might be something that they could do.
Congratulations on your breakthrough! How wonderful that your tremendous efforts are yielding these exciting results. Though I can’t understand your research, I do understand that you have devoted enormous resources of time and energy and intellect to this project.
It must be especially gratifying to you that the research may yield specific treatment.
Again, Congratulations!!
As for the end of your post about those who are not interested in learning about your research and how it applies to them, I understand that for someone with your passion about the subject, that is incomprehensible! And you sum it up well in the final sentence. I agree that for those who think there are no Effective treatments, getting information about risk is unwelcome. As for how much to “push”, I’d says “Not at all”. “YOu can lead a horse to water but you can’t make it drink,” is a maxim because it is so universal. Perhaps In the future if you come up with a concrete treatment strategy, and if it is as easy as taking a pill, they will be interested.

You’ve most likely come across the posts on the site where individuals have offered information about preventing or reversing cognitive decline to relatives or friends who are absolutely NOT interested. I faced it myself with a very dear friend. Like me, her mother and grandmother had both had AD. She was beginning to experience the first slips in her own Cognition around the time that I read Dr Bredesen’s first article. I had immediately implemented what I could glean were common factors in the 10 case studies. When I met with her and her husband to share this ( to me) life changing Information, this offer of hope, both she and her husband said they were going to “let things take their course”. They did not want to hear anything at all about it.
Sometimes you can’t even lead the horse to water.

Freely offering the fruits of your labors is about all you can do. Hard as it can be, respecting that It is totally their right to make their own decisions and not pushing at all seems to me to be the best path.
Their resistance does not in any way diminish the magnitude of your achievement.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
circular
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Re: Genetic genealogy raw data and Alzheimer's research ...

Post by circular »

floramaria wrote:
J11 wrote:Sometimes you can’t even lead the horse to water.
:lol: Isn't that the truth! :lol:
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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