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

Hello fellow patients,

We are very pleased to announce that overnight we have reached our fundraising target for important upcoming research at The Institute for Human Genetics, University Medical Center Schleswig-Holstein. We are thrilled with the overwhelming response from patients and their families in helping us reach our target in under 3 months. Thank you all for your incredible support - without you, this would not be possible.

Our next step is to finalise the collection of tissue samples. As we have mentioned previously, our team is working with researchers who have previously published findings on Post-Finasteride Syndrome to use existing samples, rather than collecting new ones. As we reached our target so quickly, we are still working through the logistics of this, meaning the study will not begin immediately. We are working as quickly as possible to secure these samples and begin this important study.

While the immediate target has been met, this does not mean we can become complacent, and we are calling upon patients and their families to continue supporting PFS Network and our work over the coming months and years. Our research roadmap will require a continuous fundraising effort to ensure that any meaningful insights can be acted upon immediately. It is critical that we do not stop and begin a new fundraising effort for each subsequent study.

To kick off our ongoing fundraising efforts, our team has personally pledged an additional €10,000. As we met our current target so quickly, we are raising the bar and aiming for €200,000 annually.

Again, we encourage you to:

  1. Set up a monthly recurring donation where possible, and encourage your loved ones to do the same. We have €50 and €100 options available.
  2. Participate in our GoFundMe initiative to maximise the impact of your contribution.
  3. If these are not viable, make one-off donations where feasible. Every dollar counts.

As always, you can follow our progress on the donate page or by signing up to our mailing list on the website homepage. We strongly encourage you to sign up for our mailing list so you don’t miss important updates.

Our efforts have gathered significant momentum with this latest achievement. Please continue supporting us so we can press our advantage.

Thank you again for all your support.

With enormous gratitude,
The PFS Network team

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Amazing! Thank everyone for their efforts and the pH team!

In addition, if I remember correctly,does Mitch also participate in the Baylor study? So there’s your penis tissue in the sample? Let’s wish“ little Mitch’s” trip to Europe can start smoothly and quickly!

I am here!I will continue to donate and do my best!

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:joy:

Little Mitch was not involved in Baylor. One of our other moderators, @M_C was involved.

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Super Job from the team and the community!!

But allow me one question.

Why don’t you collect tissue from the quickly responders, who showed fully blown PFS after one dose. And developed very severe cases. They seem to be
hardly predisposed to finasteride.

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Sorry for my ignorance but, will this study with the penile tissue samples be beneficial for those who have it very severe in the brain and muscles but don’t have any major sexual issues?

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That’s awesome so the last days there were a lot of generous donations. Thank you guys you are the best!

Let‘s reach the next donation target!

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It is more cost effective and practical to use samples that have already been collected, as they have already been validated as being severely affected in studies.

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Yes. In Baylor’s study, for example, they were able to use techniques like RNA pathway analysis to look into changes in gene expression in other biological processes, not just in the sexual domain.

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Let’s get to 200k EUR annually, that’s our next target.

Considering we raised 80k EUR in 3 months (26,666 per month), we have realistically set it way under what should be possible at our current rate (26,666 x 12 = 320,000).

Help us make it happen guys! We want to be able to move straight onto further studies when actionable insights become available, not have to start all over.

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Let’s keep it on!

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When is this current study planned to begin and how long will it take before results begin releasing?

That is good to hear Mitch. :slight_smile:
Has this question been discussed with the researchers?

I mean the fact that the penile issue samples should be enough to understand the whole picture and not only the sexual aspects of this condition?

Do you think at some point the will want to “complete” research with something other than penile tissue samples?

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It’s no new theory, only reflection of research by kitchen researching.
I understand the Androgene Rezeptor Complex docks on the DNA and induces the expression of all “androgen” gens downstream. So I think the AR overexpression is the start of it’s all.
An other amateur question, why is no research in particular blocking the AR to decrease the level to normal?

Thank you to everybody who contributed and a big thanks to Mitch, Axo and the rest of the team that has helped make this a reality. Hoping that this study yields many insights into our condition and that we will have the funds available to be able to further investigate without delay when the time comes.

With that in mind, this is not a time to let up. Keep the donations coming. If anybody is going to solve our condition it is these world class researchers. We are lucky to have them on our side so let’s make sure we supply them with the resources they will need to see this through.

I think €200,000 a year is totally doable and thanks to the team for already giving us a head start of €10000.

I am personally going to contribute another €250 now and continue to ask friends and family.

Dont stop now, let’s keep this momentum going!!!

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Any info on how long this study will last and when results are to be expected?

Thanks for all the questions.

This study should take about 2-3 years to publish, however, as we are in constant communication with the researchers we will be provided with actionable insights sooner. That means we shouldn’t need to wait for the study to publish in a journal before acting on the results in a new study. That’s why a consistent fundraising effort is so important, otherwise we will need to wait until we raise the required funds for a new study to begin.

Regarding the samples, please be assured that this tissue is appropriate and has already been validated in two separate studies (Baylor and University of Udine) as significantly affected. You don’t need samples from every piece of affected tissue to understand how those tissues have been affected. The researchers suggested the brain, as that is one of the most active regions for AR activity, but for obvious reasons that isn’t possible.

We don’t have enough information about the mechanisms involved yet to start experimenting with treatments.

Hope that helps answer your questions.

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Thanks for the insights

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I wonder why that didn’t happen with Khera at Baylor. We were in the dark for years upon years.

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Thank you for the information Mitch. :slight_smile:

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Because they were either clueless OR compromised by Merck…by force or by colusion.

I trust nothing anymore

Except of course the work Mitch and everyone else is doing
We appreciate you, we see you
Much love and respect

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