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Why couldn’t they get samples from the PFS brain bank in Texas?



I’d be willing to provide my brain for research if it came to that. I actually e-mailed this brain bank like 6 months ago and they never responded to me. If the Foundation has maintained a brain bank with them since 2013 then why hasn’t it been utilized? I think it would be super important to investigate the brain postmortem. This is how CTE was discovered. CTE cannot be found using a traditional autopsy and there is no way to diagnose it while alive. My brain would provide a perfect sample as I have severe neurological symptoms. This is something @Sugarhouse should look into. Even the researchers agree the brain is the most important area to look at.


I don’t think the brain bank has been utilised or maintained unfortunately.

Thank you to everyone at PFS Network for all the work they’ve done in moving this community forward. Also, a big thank you to everyone who donated to the study. Let’s keep going in 2022!


A massive thanks to every member of the community that donated, you’ve stepped up big time and contributed to one of the biggest milestones in the history of this condition.

As @Sugarhouse has reiterated, those of us that can afford it should keep donating regularly to ensure we can move swiftly from one study to the next as and when it is appropriate. Time is absolutely precious (for us especially) and we can’t afford constant delays down the road.

Huge congrats again and let’s build on this positivity.


curious, how do we know that brain tissue samples (regardless of difficulty to obtain them) wouldn’t be necessary if we can study them from other tissues?

is this common in medical research where target therapeutics in the brain or CNS in general have been developed by studying tissues from other regions?


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If you haven’t already, you might want to contact the authors of this study, who collected cerebrospinal fluid from PFS patients. Maybe that tissue would also be useful in your study.

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Thanks @RockyMountaineer for the suggestion, but for this study we will need tissue that has been validated specifically as androgen-target tissue, so the fluid won’t be useful here.

Thanks for your support!

I’m not sure I understand your question sorry.

I remember an update from the foundation I thought they referenced Daniel Stewart’s brain and spiral cord had been preserved after his suicide and participation in Baylor to be further studied…

My bad it was not Daniel but another 42 year old male that committed suicide and his brain was being sent off for further study…

I think the contention (@lakehouse correct me if I’m wrong) is that the aggregate of symptoms suggests brain damage so why not study a brain.



@Sugarhouse im trying to understand how tissues from other parts in the body are okay instead of brain tissues

like mechanism wise, is it the same when it comes to treatments?

Do they need research subjects? I would be glad to join if possible.

Currently not. The plan is to base this study on existing tissue samples that have previously been validated as part of two PFS studies. This saves money, time and organisational effort. Only if these samples are not (fully) useful anymore will we require additional samples. We will cross this bridge when we get there. But thank you for willing to volunteer. We will reach out to people as required.


I don’t get this fixation on the brain. Any androgen-targeted tissue that is highly symptomatic in patients would be interesting to study. This certainly includes certain brain tissues, but also penile and prostate tissue, for example. There is no reason to believe that brain tissue is “more important” to study than other relevant tissue. And while it would certainly be interesting to compare different tissues to see if the effects are the same, this is not practical. It is obviously not trivial to perform a cerebral biopsy.

Penile tissue is highly dependent on androgens, it is obviously highly symptomatic in PFS patients and it is relatively easy to get via biopsy. This makes it the perfect target tissue for this study. And, obviously, the bonus is, we already have tissue samples.

We can all think about various “What if” scenarios and discuss them to death, but a certain pragmatism is needed to accomplish anything practical. This is a study that will look directly at tissue that we know is highly relevant and will give us new insights into our condition. And then we will base any further direction on these results.


Completely agree

Was just curious about the science part of why tissues from one part of the body work when studying and how they can substitute for another part

I guess it just comes down to mechanisms being the same for the androgen receptor regardless of where it’s located?

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This is very likely. Obviously, one would need to compare to be entirely sure, but this is not practical.

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Axol himself said the brain would be the most ideal area to analyze and if we have had previous people donate their brain and people like myself that would consent to it then why is nothing being done on this front?

These researchers said the brain would be valuable to study so they seem willing.

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