Out of the wilderness: New scientific research and major awareness campaign

General Discussion
#88

I will continue to donate after my salary this month and reach my goal of 1500 euros as soon as possible!

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#89

I have a question. Some of us (including myself) not only hurt ourselves with Propecia, but also used minoxidil and other endocrine disruptors (but Propecia is definitely the most critical factor). If more samples are needed for this study, are we qualified to provide some Body tissueļ¼Ÿ
I can to be ready for the fare to Germany soon

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#90

@axolotl thanks for explaining so much about the study. I am very excited about the project.

I have two questions just for my own clarity:

1.) Baylorā€™s proved that something is going wrong somewhere in the gene-protein translation. To my understanding the two most common reasons for the results could be
a) Changes in methylation
b) Changes in histone structure
(and maybe c) DNA fragmentation/bad repair mechanisms?!!)
Why is the study first looking at histone structure and not at methylation? Is there any reason? Is genome wide assessment of methylation too expensive?

2.) To my understanding epigenetics can be different from tissue to tissue or even from cell to cell. What tissue(s) will be looked at?

Thanks!!

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#91

Thanks for your questions. Axo isnā€™t around at the moment but Iā€™ll do my best to answer them.

  1. Thereā€™s no evidence in findings or suggestion theoretically based on any experience DNA repair mechanisms would be involved at all.
  2. We have obtained ethics approval for methylation analysis so will consider that as we iron out the protocol in line with the costs. We may do a ATACSeq in preference alongside RNASeq, and methylation analysis.
  3. You are right epigenetic changes take place per cell and cell type. Weā€™re hoping to use genital skin fibroblasts as validated affected tissue and androgen target tissue, which is a stark contrast in findings to that of the Harvard study (which did not use significant androgen target tissue).

I hope that helps.

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#92

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 indicated 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 ā‚¬10,000 EUR. As we met our current target so quickly, we are raising the bar and aiming for ā‚¬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 ā‚¬50 and ā‚¬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 donā€™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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#93
#94