Rules around user fundraising and next steps

General Discussion
#1

Hi all,

Recently there has been a significant increase in the moderators having to remove personal pitches for financial support due to financial hardship, promotion of funding plans by individuals for media projects, and the suggestion of financing of non-viable research. We would like to clarify that fundraising to projects not initiated by the site or PFSFoundation will be removed, and share some of the reasons for this policy.

As it is not always public, it can be very frustrating for users to see no evidence of day to day progress. This issue is complex, and the path to effective progress is long and requires hard work. However, we strongly believe things are poised to move more rapidly thanks to the immense collective efforts here. We will be providing feedback at the end of the year on progress and plans for early next year. In a nutshell, since 2018, enormous patient efforts have transformed this platform. This forum had become rudderless due to infighting, the endless insistence of a part of the membership on an ever-increasing amount of simplistic etiological claims, and ultimately a staunch decline in activity and momentum. As @axolotl mentioned, looking at the forum in 2017 via an archive site such as the waybackmachine shows a rapid and remarkable transformation. Our efforts will shift to outreach and new projects in the new year, in which we will build on this hard work.

Fundraising

I would like to say a few words on fundraising. The rules we established upon relaunch of the site were there to allow for the more professional operation that was so desperately needed. User-initiated fundraising cannot occur on this site, no matter how strongly individuals feel the project suggested are of benefit. Users here are often desperate and not well off. There is a paucity of available funds, and many ideas of how to spend hypothetical sums. In any circumstances, users have absolutely no way of ensuring delivery of these projects nor preventing fraudulent use. No user-asserted benefits or hopes for the outcomes of any solicitations could be quantified or verified, and it is beyond our capacity to do so. Users in poor financial circumstances cannot solicit financial support here. It is a tragic situation that many of our users are in a desperate state due to the effects of their condition, and the moderators cannot manage and verify the validity of individual claims to determine on a case by case basis.

Any projects intended to raise media awareness should be pursued on a purely volunteer basis. With hundreds of instances of media coverage, there has been no translational benefit whatsoever in terms of research or funding, nor any reason to believe there would be. While some users believe strongly that finances will inexplicably appear if a documentary were to be available on an internet service, this has occurred in several countries on national television with no increases in funding. Patients affected by other similar syndromes (Lupron) have also had substantial coverage with zero effect.

Owing to the paucity of molecular level investigation, the possible scope of any documentary is inherently limited at this point in time and would largely need to focus on people’s stories. We can - and should - achieve this without monetary expenditure via social media / YouTube. As we have multiple staff with professional editing skills, our YouTube series provides a perfect opportunity for users to share the impact Finasteride has had on them. When complete, this coherent series will serve as a huge benefit to awareness of the problem and can be shared by anyone seeking to drum up coverage from news organisations or film makers who want to explore these stories further with their own finances. We are currently in contact with the BBC who want to produce a short documentary on the issue for UK national TV and worldwide (via the internet) coverage. This again costs nothing, yet volunteers are few and far between. There are many opportunities for awareness beyond this that cost nothing, and user efforts should be focused squarely on the many zero-cost opportunities for spreading the word. Anyone seriously wanting to assist in the awareness of our issue should reach out to our media team, namely @Greek, @sugarhouse, @Borax or @axolotl.

Looking Ahead

We are working extremely hard to network and bring research proposals to the community and beyond for fundraising. These will be strictly in conjunction with scientists with demonstrable experience in applicable fields, providing clear proposals and structured models of funding. We have reason to be optimistic that the important work by the propeciahelp team and the fantastic contribution of users submitting their surveys will translate into practical research interest, and - importantly - better inform research.

Please remember, this site is the result of immeasurable personal efforts on the part of committed patients. While we appreciate member participation, we also ask for adherence to the terms of service and respect for the limits of the service we offer at no cost.

Thank you for your understanding. We are hopeful of being able to share news about upcoming opportunities in the coming months.

To wrap up, I would like to take this opportunity to thank the propeciahelp team for their relentless, selfless and excellent work they are doing for this community, every day. I hope every member of this site will join me in those thoughts.

Best regards

Awor

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#2

I indeed join you in these thoughts. Thank you guys so much for your efforts. You are heroes.

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#3

I hope that any fundraising done via this platform will be coordinated with and approved by the board of the foundation. Funding pet projects of forum members or even moderators without working with the foundation would be a terrible idea as you point out; we need a coordinated and formal process with any funding initiative.

I have nothing against the survey or even the 23andme project as these projects were done on a volunteer basis with no community funding. I would support more integration of donation opportunities into this forum that are signed off by the foundation, maybe even individual projects.

Thanks for your hard work.

1 Like
#4

Thanks to everyone who is putting in hours to improve the community and charting paths forward. This fundraising policy makes sense.

At the same time, I hope that appeals for funds that ARE “sanctioned” will be published visibly and clearly, so as many people as possible will be able to see it and pitch in if they can.

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#6

Thanks guys, we are all counting on you and your work :wink:

#7

Thank you all for the tremendous work you do, which is not always appreciated. It is always important to remember the importance of all contributions and the need for everyone’s investment. Congratulations to you all !

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#8

Hi, I haven’t been very vocal on here, but my long-term partner has PFS and I’ve been working on the first full-length book about the syndrome for over a year. I’m a well-published author and writer and am agented with Transatlantic. I’ve interviewed many men, women with PFS, lawyers for class actions, been in court rooms, interview Melcangi, Rynne, Irwig, Goldstein, etc., and Sylviane did ask on my behalf for an interview with some of the founders of this forum. I am also in the planning processes of a documentary to accompany the book with a London filmmaker and documentarian. Please keep me abreast of what is happening with the BBC. If someone could get a hold of me via my website, it would be very much appreciated. www.maryjenniferpayne.com . Thank you.

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#9

Hi @Izzycat13,

@awor and I are the administrators of this forum. We are currently very busy but will be available in late December if there’s matters you would like to discuss. I’m sorry to hear your partner suffers from our condition, and would strongly encourage him to sign up to participate in our post-drug syndrome survey. Instructions for doing so can be found by clicking here.

Best regards,

Axo

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#10

Hi Axo,

Thanks for reaching out. My partner took Propecia for nearly 20 years and has had PFS for over five years. I’m about midway through the book and have included the forum in one of the chapters, but would love a chance to chat and perhaps include some quotes about it.

I will get in touch in late December. I’m hoping to be in the UK to shoot a teaser for the documentary around March, so I look forward to hearing the angle the BBC is taking.

Best, Jennie

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#11

Hi all,

This is not a message for the majority of users, but I would like to reiterate this and would like to draw particular attention to this part of Awor’s message

The slow speed of progress is a frustration for us all, but there is simply no quick fix and hard work has to be done.

I have noticed a totally unwarranted increase in general anger and abuse of the moderators lately. My supposition is that this is related to many users having expressed that they are frustrated as well as being in a particularly low place with their symptoms. We have tried to take this into account. We won’t, however, have the moderators - also struggling - burnt out by dealing with such poor behaviour.

All of us work very hard, and have to continually show restraint when endlessly dealing with lashing out or severe distress caused by the physiological and psychological impact of this widely variable condition. I know many always feel strongly they know better in every direction, and think they should be entitled to use this site for whatever they want including recruiting users to a new “better idea”, but the terms of the service are clear and have been reiterated above.

None of these matters are as simple as many appear to think. There is no entitlement to use this site to recruit patients because you have a nebulous grievance with the PFS foundation or this website. As we are moving into a very busy time trying to build on the work done the past years, we don’t have the time for back and forths. The site’s traffic is increasing - the last month saw double the signups of this time last year - and I am far more concerned about the moderators ability to keep their important work up in this immensely trying situation than have them spend hours trying to reason with the same people endlessly when it is clear they maintain a deep resentment for the site and its staff, yet seem to think they must be here regardless.

As mentioned, this is not a message for the majority of users, but please treat the staff - and the clear guidelines - with respect. The staff can always be messaged in the event users want to help collaboratively productively, and we provide many ways to do so.

Best wishes,

Axo

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#12

I think the foundation and PH is doing an incredibly important job. Thanks for the sweat and hard work, you guys are doing!

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#13

Hi all,

A reminder: Projects administrated by the PFSFoundation are permitted here, with or without our endorsement. Beyond that, what is promoted on our platform is the sole discretion of our team. Any other fundraising or related content is not permitted here. Please see the first post of this thread for detail on why this is the case.

I am pointing this out again as Mitch received an unprompted and strange message from a problem member a couple of days ago stating he was “too experienced” to post here now as he is now a “board member” of a months-old organisation. This rant referenced arguments between him and a member of the forum who he had incorrectly decided was an administrator here.

Registering a fundraising entity is a bank account, and something anyone can do in a few weeks. This does not afford either competence or relevant experience with the issue. It is not permission to post fundraising content on our platforms. Patients should not be contacting scientists with this expectation.

As Mitch has recently posted, after years of advice we are currently organising research projects that we will promote and fundraise for here. Pending availability and approval, this will be through the PFSFoundation through an account that will be available at the time. I am hopeful for something promising in summer.

Thank you for understanding :slight_smile:

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