Upcoming research at The Institute for Human Genetics has been fully funded

General Discussion
#43

See above. It is not practical. It is not trivial to do brain biopsies. And we already have validated penile tissue readily available. There is a dramatic difference in risk, costs and logistics between the two approaches. All these options were discussed with the scientists in questions and the approach chosen was considered our best option. At this point you have to trust the judgement of the specialists.

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#44

Why did the foundation make this statement they had this man’s brain from Baylor??

Also I know androgen receptor is the same throughout the entire body, including the brain…

Also I know based on old tests that awor had done there Is nothing wrong with the androgen receptor…The hormones bind and it does its thing which is a very complicated and poorly understood process…

The problem lies downstream in the “wiring” so called which is what lead awor to baylor and the “gene expression” analysis…Because that is the end result…It is not normal.

#45

That’s pretty sad that the guy donated his brain, the Foundation said they were sending it for research and then we heard nothing more about it.

I think it is paramount that we study the brain.

I’m not trying to take away from this study which I think will have tremendous value using previously verified specimens.

For me personally though, most of my symptoms feel like they are caused by changes in my brain.

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#47

Studying the brain is just not feasible at this point, unless someone has a bank of 20+ samples readily available to be studied. The cost would also significantly increase.

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#48

How much would it cost to fund a Fantastic Voyage type treatment

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#49

Billions. Although the scientists we are working with are already quite petite, so the costs of shrinking them will be much lower, which may reduce the cost.

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#50

Just in case anyone didn’t understand with language barriers etc: https://en.wikipedia.org/wiki/Fantastic_Voyage

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#51

I think this is fantastic news and will enjoy the knowledge that something is happening.

I just want to say that there is no need for the study to be adjusted or rewritten based on my preference, hunch or guess.

Thanks!

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#52
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#54

Thanks for the continued support after this announcement. Although donations are continuing to come in, there has been a drop-off.

We want to underscore how important it is for patients and their families to continue contributing where possible. If we are able to meet our annual fundraising target, it’s likely we can begin further studies without delay, and without needing to fundraise again from scratch.

Please give what you are able to at pfsnetwork.org/donate, and encourage family and friends to do the same.

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#55

Knowing how important it is to continue to raise money so that we can act on any valuable insights that this wonderful team of researchers discover, I have saved up another €150 to donate at this time.

Also, just in appreciation towards the continued work that PFS Network is doing on a volunteer basis. The hours of time spent on these initiatives must be massive.

Let’s continue to show our appreciate and support. I think this is the best opportunity we have ever had as a community.

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#56
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#59

You absolute fucking legends.

There is a special place in any paradise you imagine for you guys.

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#60

Just signed up for the €50 recurring donation. Love the work this team is doing! :chart:

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#61

A quick update on funds raised since we announced the new study.

In addition to the 10,000 EUR contribution from our team, donors have contributed an additional 3350 EUR in the last 3 weeks. This is promising but a dip from what we saw during our fundraising campaign.

We’ve updated the meter at pfsnetwork.org/donate to reflect the progress.

Thanks to everyone who has contributed!

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#62

Hello @Sugarhouse thank you for your team’s research efforts. I just signed up for the mailing list. I did so on the donation page. Does this mean I will receive emails with updates on the study? Before it’s officially published. I’d like the good news as motivation.

#63

Hello @FredEfterhawn,

Thanks for signing up. We’ll be doing our best to provide as many updates as possible on the study’s progress and other news as the study progresses. I saw your other topic, please feel free to reach out if you’d like to help and we can meet for a call.

1 Like