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

General Discussion
#65

Hello everyone,

After some feedback from various patients, we have made some changes to the PFS Network homepage and donate page.

  • We have updated our homepage so the first thing users see is that PFSN is a registered charity and a link to our latest project/donate page. This should make it clear that our group is fundraising for research and how to donate. Apparently the Donate button was obscured from view on mobile and was not entirely obvious on desktop, so this should fix that problem.
  • We have included a recurring donation option. Our payment gateway, Stripe, does not allow for recurring donations unless they are set up as a subscription payment. We now have two monthly recurring options - 50 & 100 EUR. We kindly ask any patients & their loved ones to set up a recurring donation if you are able.
  • We have simplified the study details as much as possible. Please note that epigenetics is an extremely complex subject area and it is not a reasonable expectation for patients or their loved ones to understand it, or the methods used in this study. We hope that the updated text will provide more context around why this study is important, what it hopes to achieve, and what an ideal outcome looks like for patients and their families.

Thank you all for your continued support.

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#66

Great news awareness is the key

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#67

Hello everyone,

Just a quick note to let you know we have hit 35,000 EUR in total funds raised. That is almost half of our goal in a little over three weeks. Thank you to everyone who has contributed thus far - this is a huge achievement and we are enormously grateful for your support.

Although a few patients have reached out about setting up a GoFundMe, we would love to see more uptake. Iā€™ll be putting up a post tomorrow for anyone interested to share how it works.

This is a fantastic option for any patients who have a solid support network of family and friends who they are comfortable speaking to about PFS.

Take care,
Mitch

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#68

This is amazing news

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#69

Thanks for all the hard work on this, unbelievably difficult complex problem. I have a couple questions related to fundraising as follows:

  1. What is the difference the PFS Network and PFS Foundation? Obviously two different organizations. Is the Foundation also involved with this effort?

  2. I have donated numerous times to PFS Foundation. It was always easy as I used my PayPal account to pay. The PFS Network donations are listed in Euros and uses Apple Pay or credit card. Iā€™m not sure how this works to donate with Euros on my credit card also am more comfortable donating with PayPal since it is more secure. Any reason it was set up this way?

#70

Thank you for the support, and the questions.

  1. PFS Network and PFS Foundation are both registered charities. PFS Network is made up of the moderators and admins from this forum, while the PFSF was set up by John Santmann in 2013. The Foundation was not involved in organising the study itself but are supportive of our efforts. We are working with them to send out information on the study to their mailing list.
  2. Our website uses Stripe as a payment gateway, which is as secure as PayPal and used by companies like Reddit and Lyft. Stripe integrates seamlessly with Squarespace which is how we built our website. We need to select a ā€œpresentmentā€ currency on our website, and as the study will be paid for in EUR, it made sense to choose EUR. I would recommend using xe.com to calculate the amount you want to donate in EUR. For example, if you are in the US and you want to give 50 USD, use xe.com to calculate what that is in EUR, then enter that when youā€™re donating. We also have options for recurring donations of either 50 or 100 EUR which automatically debit your card each month.

I hope that makes sense but feel free to reach out in PM if you have any more questions.

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#71

That is great news, Mitch. Hope we can keep it up.

I just donated 100 EUR. I wish I had more money, but I just donā€™t make enough at the moment to donate more, but this will at least be my monthly contribution for sure.

If we all chip in with the amount we can afford we will reach our goal soon enough.

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#72

Your contribution is greatly appreciated. Iā€™ll be sending out some updates via our blog later today.

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#75

Hi there,
I would also like to make a donation, but I donā€™t have a credit card.
is it also possible to send the money by bank transfer? For this I would need the bankā€™s IBAN.
I think everyone in the US has a credit card. I come from Germany, credit cards are not as widespread as in the USA.

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#76

I will send you a PM.

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#77

Wonder where the donations are at now? Shame someone like Elon Musk who got a shitty hair transplant doesnā€™t donateā€¦He could fund dozens of projects with pocket changeā€¦

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#78

Weā€™ll be putting out an end of year message in the next week or so with an update.

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#79

Please note for anyone reading this thread that PFS Network is not the PFS Foundation. The PFS Foundation does not currently have any research projects they are fundraising for, so if you wish to directly fund our research project, please donate via our website.

#80

You guys should start up a Facebook page also similar to the Foundation might drum up some more interest.

#81

This is one silly question. I think both the PFS foundation and PFS network are interested in the new research project. Why donā€™t you fund this project together?

I donated 250 ā‚¬ via https://www.pfsnetwork.org/donate
and when I m in a better state, Iā€™ll donate again.

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#82

hey guys will there be a research effort after n how to restore penile health? say this research shows us how to fix our damaged brain and dnaā€¦ will this downstream restore our penis function or is it still going to be damaged? like fibrotic/ like the rats in the rat study of fin/dut with tissue changes in penis.

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#83

Hello @Ygb350

As it is more than likely that all of the downstream symptoms are driven by the same, or similar mechanisms, any research that elucidates those mechanisms will in theory help with every symptomatic domain.

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#85

@Sugarhouse hey man can you PM me bank details iā€™d like to send $500

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#86

I have to admit that a go fund me isnā€™t really something I feel that I can do. Iā€™ve donated a 100 Euro so far though and planning to increase this further in 2022.

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#87

It all counts - thank you for your contribution.

Itā€™s actually pretty amazing how far weā€™ve come in 2 months just through small individual donations - weā€™ve now raised ā‚¬51,500.

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