Lab in China testing CRISPR as a treatment intervention for PFS

Therapeutic Efforts
#1

The Baylor research will (hopefully) enlighten us further, but the best guess is that the research will show that we have silenced AR genes in certain tissues.

Its entirely possible that this is a downstream effect and in that scenario it opens a can of worms. Its entirely possible that this is more neursteroid related and that opens a seperate can of worms.

But based on the evidence we have so far, the most rational theory is summarized in sentence 1.

With that, further research will surely need to be conducted. I am 100% on board with helping to fund this research. Its a must.

BUT, the pace is too slow for us living in the now. We need a sub-group of us to pinpoint a lab or multiple labs in China that is willing to use CRISPR to edit our AR gene(s).

There are a number of barriers to this: (1) I’ve read a study that showed there is small chance that the change in the genome could ultimately go back to being modified (2) $$$$ (I am going to try to find out the price of such an experiment) (3) Finding legit labs willing to do this (4) China has cracked down in the past year on “black-market medicine” (5) Finding a few PFSers willing to be the subject.

I am going to begin contacting labs and scientists and seeing where I can get with this.

FWIW, I had set up an experiment with a lab in southern California around 4 years ago that would have used penile tissue to verify if we had silenced AR. We would have known the results 3 years ago, but unfortunately I was talked out of it by someone telling me to “just wait for the Baylor study its almost here”.

We need to continue to support the Foundation’s endeavors and future research while also taking part of this ball game into our own hands.

If anyone is interested in being a subject, please PM or post in this thread.
If anyone has reached out to any scientists or labs around the world to assess their capabilities and interest in this experiment please, let PM me or post in this thread.

I understand that this thread is probably better suited for SolvePFS.com, but that site has been merged with this one.

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#2

I’m willing to be a subject. Assuming, of course, that we can find a legit lab…and that I could afford it.

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#3

I had a few guys lined up that were willing to crowd source the 2016 experiment we almost ran. We would definitely crowd source this one as well and hopefully send one of us with you to wherever this would occur.

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#4

I’m not rich or anything but I would be willing to financially contribute to someone wanting to try this route but can’t afford the costs

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#5

I don’t have much money at the moment but I might have a good job opportunity coming up soon.

#6

The trick is getting crispr to the affected genes without making changes to other genes. Also what about using Crispr to demethylate 5ar1 and 2.

I hope this thread isn’t removed for mentioning crowd funding.

As a community we need something to give us hope and I’m struggling to see where that is going to come from right now.

We have waited long enough for Baylor and it is out of our hands, it’s time we moved on.

There are global crispr conventions if anyone is able to attend.

There are also Crispr biohacking conferences as well if people Google.

Obviously anyone attending these might be able to get invaluable information for this project etc.

Something to read. We are not the only ones to reach out to the crispr community, although I think this case was more complicated.

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#7

I would be willing / keen to be a subject

#8

There is no proof for silenced AR genes.

The melcangi study showing higher methylation didn’t correlate with
symptoms.
So we can assume demethylation is not gonna help us at all.

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#9

Isn’t methylation associated with aging. The citalopram study showed methylation changes to multiple genes. Methylation silences the gene. Has any research been done to show silenced genes in PFS. Could there be different causes of PFS. Melcangis study only used a small sample size. We are still missing important answers after 7 years of studies. Answers that could have been in part answered by the US.

#10

The CpG island of the AR gene is heavily methylated in androgen-independent human prostate cancer DU145 cells, resulting in masked AR expression (85, 87, 88). Treatment of the demethylation reagent 5-aza-2′-deoxycytidine restored AR expression in DU145 cells

https://academic.oup.com/jcem/article/88/9/4043/2845674

#11

Sounds great, but do we actually have what we would need to go in and use Crispr already? I thought we need to find out what is actually wrong before it will be possible to reverse it. Just curious how it would work exactly. If you have the time, a little elaboration on what the lab would actually do would be appreciated.

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#12

We have a good idea, but the Baylor study will clarify whether the AR gene is silenced or not - or- what other genes may be.

As soon as that is clarified, we can act (on our own).

The lab/scientist would use CRISPR to genetically modify (edit out and replace the sequence) of our AR genes. This would remove any modification causing a silencing of the AR gene. Of course things are rarely this simple and their could be upstream or downstream effects that would nullify CRISPRs benefit, but hopefully the Baylor study can help us identify that as well with some assumptions.

#13

I would assume they would work on the AR genes that can easily be accessed by Crispr so it doesn’t interfere with other genes.

There are various AR receptors in the brain but how you fix those I don’t know.

A lot still rests in the hands of Baylor which means we are right back we’re we started. So we should consider a test that could tell us which genes are affected and put the ball back in our court. Participants paid Baylor $2k.

Wouldn’t the Crispr lab want to know exactly which genes to edit based on a current test. Otherwise they are shooting in the dark and that’s unlikely to happen with a human subject. Baylor would be an overview but it’s unlikely to be used to make gene edits on a patient.

#14

Could a group of us all pay around that amount and get the same testing done and basically do our own Baylor? Or is the data analysis too complicated

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#15

If Baylor has actually “completed” has the foundation claims despite the 10 different stories from khera even it never publishes khera would be free to talk about it openly…Its over the study is done so all this hush hush stuff is bologna…Don’t know who will access to it but of course he knows and if its actually been in peer review for a year as some claim its probably not going to publish but he could still help the foundation…

#16

How much money are we talking about to run another Baylor like study? $500k?

#17

didn’t another study already clarify that its not the AR gene thats silenced for everyone?

also, according to the foundation’s theory, we would need 2-3 more types of tests before we can use CRISPR to help us

#18

Wasn’t the problem with that one though that they aren’t looking at every tissue? So you could have silencing in one tissue but not another

#19

I think that there a multiple forms of this disease that act quite differently so maybe it’s not too far out of the realms of possibility that one type is caused by receptor problems and other is not. I believe the mods thought of this as a positive discovery for a reason. I might be wrong.

#20

@Lostinaustin I posted on this topic a while back out of desperation. I’m not rejecting the idea but here’s what @axolotl had to say

It’s too early for crispr, but I like the passion here haha. If it was super easy and accessible and we had a gene we highly suspected sure. If I’m not wrong there’s lots of genes that regulate receptors even if we are going with that.