Dr. Greg Neely

[samsung]

I just contacted this dude. If he gets back to me I will report to the board. Interesting stuff.

https://amp.theguardian.com/science/2019/jul/21/taking-the-sting-out-australian-gene-editing-is-crossing-the-pain-threshold

[samsung]

I just got this from Dr. Neely. I am willing to underwrite this at least partially. Please spread this around. This could be a pretty big deal. Not sure how to handle/organize/proceed.

"Hi Matt,


Thanks for your message. I am traveling right now but I'll read a bit on this when I return.


But in short it would be possible to do a genome wide association study for this. You could even organize among your group. This would require is SNP genotyping of each patient, at a cost of about $100 per person I believe. If the patient group is cohesive you could fund the study yourself. This would tell you the major genetic causes, and sometimes this can help guide how to treat.


Best wishes,


Greg

Greg Neely

Head, Dr. John and Anne Chong Lab for Functional Genomics

The Charles Perkins Centre

School of Life & Environmental Sciences

D17 - Charles Perkins Centre, Johns Hopkins Drive

The University of Sydney | NSW | 2006

T +61 2 8627 0519

E greg.neely@sydney.edu.au

W  https://www.neelylab.com/"

[Hawk]

This is definitely an interesting link.

I am also interested in the message you sent him that he is responding to give us a little better idea of the details of and exactly what he is saying and how this could potentially relate to Peyronies Disease.

Hawk

[samsung]

Here is the original message. I did the best I could word it and said to him:

"Hello Dr. Neely,


Thank you in advance for reading this. I am contacting you personally and on behalf of the forum at:


https://www.peyroniesforum.net


I recently read an article about your lab where it said you and your student tackle things you find "nteresting." Here is where we come in.


Peyronie's is a relatively common disease that almost no one has heard of due to embarrassment of the sufferer. It is psychologically and physically devastating. And it has been tied to a number of other fibrotic diseases. There is an incredibly high instance of Dupuytrens contracture, "frozen shoulder" disease, Reynaud's and a number of other maladies that co-occur along with peyronie's.


Why I am writing to you is that there is almost no attention paid to this horrible condition and there most certainly is a genetic commonality among peyronie's sufferers.


It has 2 generally (disputed and/or accepted) causes. First is a penile fracture that leads to fibrosis and there are many others that do not recall an injury and it is suspected of being a sort of metabolic syndrome as it co-occurs frequently with diabetes, heart disease, etc.


Would it be possible for some sort of enquiry to be made? Not sure how this would start. But certainly some sort of genetic assay could be done. I know 16 thousand people who would gladly submit to testing."

[samsung]

If you have any suggestions or anything you want me to pass along to him, fire away. I am not sure how I should answer his email back to me.

[Hawk]

It is very interesting.  I would like to know if he really thinks Peyronies Disease would lend itself to the kind of thing he is doing. If so, what the details of the process would be and what his goals would be in regard to Peyronies Disease.

You are to be commended for reaching out to him.  One of my concerns however after 15 years in this business is that I would be surprised if we got 160 people to cooperate with genetic testing much less 16,000.  I would like to find out that I am wrong.

[samsung]

I answered him back. We'll see what he says, although I probably won't share it here.

[james1947]

Hmmmmm

What is the reason Samsung that you will not share with us?
Can you update us in a PM to Hawk, me, or some other moderator?


James

[samsung]

I will update you if he gets back to me. I was just irritated when I wrote that. I am just frustrated that most people here are more interested in debating the merits of water fasting and vitamins than in banding together as a group and finding a cure. A real one. Not hippy b.s. I realize that is easier said than done, but it just really seems to me that a lot of people here are more generally interested in wallowing in misery and trolling people. Almost like their lives are all about peyronie's and if an actual cure were offered they would run the other way. I wrote that after I found several threads involving people submitting cheek swabs for DNA studies and petitions to the government, etc. and they all fizzled out just like this one probably will.

[james1947]

Samsung

We, as a forum tried two times to increase awareness for Peyronies, sending letters to doctors, gov organizations, researchers. It was a very tiring and frustrating experiment, buy the end no one continued.
I would not like that your initiative will end the same.

We need more information on how, what should be done, maybe first what the hope is

James

PS:

...debating the merits of water fasting...

I am also not a fun of the above, but many forum members are and I respect they willingness to do something that is definitely not easy to try to find something that may help.  

[samsung]

I know everyone is just trying to help. I understand. I will do my best too. If this guy gets back to me, I will definitely follow up. Even if he doesn't I will keep pestering him.

[Hontas]

We need genetics and molecular biology specialists that have experince with cancer and desmoid tumors. Not urologists, as far as i know he isnt a urologist so maybe worth a try but its very easy to get scammed in these types of things as well so its better to be careful.

Edit: Why not go for a Korean team? I for one trust koreans much more than US' corrupt doctors and i assume they have good enough infrastructure to conduct these analyses. They are also a really smart bunch with good technology

[samsung]

I don't know about all that. I know that one person needs to start in one direction. I don't see why a urologist's office can't be a gathering point for a study. If genetic samples are needed I hardly think we are all going to send them to some stranger in the mail. There needs to be some legitimacy with a known quantity (a U.S. based practicing urologist would be a good start) and expected outcome and it can't cost a lot of money to particapate in. And it can't compromise privacy. Forget all the complicated stuff and Koreans and let's start somewhere simply. I have no idea how to organize a study. Surely someone on here does.

[Hontas]

US based practicing urologist is the last person possible that could do anything remotely to assess the risk factors. I didnt say anything extraordinary, its just that if you want to get scammed and lose your privacy, US medicine is number 1 choice for that. I suggest Europe or Southeast, its nothing complicated and i bet it is much more accesible to us as well. US has high technology but its for government and lobbyist rich companies. General public only has scams and laughs sadly. Yeah lets talk in private

[pey ron]

i wonder if he needed to move to australia to break free from the nanny state

[hope794]

Samsung, i connect rarely to the forum, but THANK YOU for what you're doing. I'm following your great idea and support you.

[james1947]

Hontas

How well you know the far east?
I am living here 18 years of my life, I will definitely trust US doctors, researchers, etc' much more than anywhere else!

James

[samsung]

Thanks Hope794. I do not know if he will get back to me. I haven't heard anything since 2nd email. He may still be traveling. And I do not know what will come of this, probably not a lot as I am no microbiologist or billionaire, but I will certainly follow up.