Call for participants for upcoming research at Institute for Human Genetics

General Discussion
#26

So on the subject of research has it been considered to try and induce PFS in a lab setting? On lab animals? Or hell, cocky PFS deniers who might do it for free meds.

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#27

Itā€™s hard to say. If the samples are taken care of well they could last for years. We donā€™t want to take new samples every study though, so weā€™ll be doing our best to preserve them for multiple studies.

Thatā€™s certainly where we would like to go - an animal model - but that requires understanding the mechanisms driving PFS first. Thatā€™s what this study, and subsequent studies, will be focused on.

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#28

Hello,

We are still looking for more volunteers for upcoming research. Weā€™re pleased that weā€™ve had over 25 applications, but to ensure we are selecting the most suitable samples, weā€™d like to get that number up to at least 40. The sooner we get applicants organised, the sooner we can get started.

If you are interested, please email at contact@pfsnetwork.org.

Thank you all for your ongoing support.

5 Likes
#29

I sent my application but I forgot to add a few symptoms. Mainly skin related.

Is that an issue?

#30

Not a problem - if you want to send a follow up email to update then I can update your info.

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#31

Please note you can now apply to participate on our website: https://www.pfsnetwork.org/donate

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#32

There have been a few questions about the procedure and where it will be done.

Just to clarify - my information initially was incorrect. We will be taking scrotal skin, a 5mm piece, from below the base of the penis. It will not leave any scarring or cause any structural damage whatsoever.

3 Likes
#33

Mitch, how about flirt with us a little before you ask for a piece of our nutsack? lol

3 Likes
#34
#35

Is the sample collection underway?

#36

No itā€™s not unfortunately. Weā€™ll provide updates once weā€™ve selected patients to participate.

#37

Was the ethics proposal approved? Or was there any feedback on it

#38

No news yet Iā€™m afraid. Rest assured as soon as we have anything weā€™ll move quickly to get the study started.

5 Likes
#40

I see you complaining but have you done anything to help our cause?

And youā€™re wrong, btw, the sample collection will start in february.

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#41

The study begins early next year. What have you done for our cause?

#42

Thanx for responding. Thatā€™s good news.

I did 2 times 100 euro, for what itā€™s worth.

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#43

Thanks for your donation and support. Please be aware of the fact that guys like Mitch and Axo are patients just like you and me. In Axoā€™s instance, he is one of the most severe cases of PFS. They are doing their absolute best. If you had bothered to show up to one of the webinars that Mitch does on two separate occasions every 3 months you would know that there was an ethics approval process. This is extremely standard with studies of this nature. It is unreasonable and unhelpful to ignorantly deem this a ā€œfailureā€. Think about what impact this has for new patients who might be considering donating. Does this help our cause?

Mitch personally contributed 40,000 euros to the first study. Letā€™s show some maturity and gratitude towards those who are doing the mostā€¦

1 Like
#44

Hi Erik, my apologizes to Axo, Mich, you and the others who i offended I asked for deleting the message.

It wasnā€™t ment to being rude. More like too bad for all the work because i thought it was stopped.
Also Englisch is not my native language so it was probably more rude than it was ment.

So keep up the good work. I hope all the work and effort from those guys and all the donations from our members will pay back.

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#45

No problem :slight_smile: ! Itā€™s one of the most important initiatives our community has launched to date. I hope you will continue to support!

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#46

Yes, offcourse