Creating a team of volunteers

Hello everyone,

Can you imagine if the PFS Foundation had enough money to contract 10-15 people working for them? It would probably help us accelerate things a lot.

Obviously, there is not money for this, but if 50-60 people agreed on volunteering some hours every week, we would probably make things move as if the foundation had several employees.

I know that some have already devoted a lot of time to help us move forward. @Awor, @axolotl, @greek, Philip, @Dubya_B, and some others have worked very hard these years.

So maybe many more can join this effort as volunteers and committing to some hours every week. For example, in my case, I am in a terrible physical state and I am struggling to get the minimal money to survive, but I can commit to 3 hours every single week. Maybe others can commit to 5-10 hours every week? We could create a very important workforce.

Probably the best way for this to work is in a “corporate” way, with the people who are leading the efforts giving the guidelines or instructions or creating areas of work, as some of us are still walking in the dark, while others have a more clear image of what needs to be done.

Maybe we could create a way for people to register as volunteers, indicating the weekly hours they can work for the foundation and the fields they know more about?

For example:

How much time can you spend each week volunteering?
Example: 8 hours

What are your areas of expertise?
Examples: Marketing, IT, statistics, law, etc.

In my case, I can commit to 3 hours each week, I can help with Spanish translation, contacting or writing to Spanish media, EU data protection. I am also open to do any other thing that those who are leading the current efforts propose (e.g. administrative tasks, etc.), trying to get the most of every minute we can devote to propeciahelp/the PFS Foundation. I can also help with legal assessment or basic legal proceedings in Spain in case it was needed, I used to work as a lawyer, but I don’t think in my current state I can help with any major legal cause.

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I would be up for this went from having a busy life with a relatively high stress job to not working so have time on my hands to help

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Brilliant idea. I’m not sure I have any specific skillset that would be directly useful to the cause at the moment, but I would definitely like to help with stuff like coordinating and organizing things. Also if anyone else is up to it, trying to educate ourselves re the biology of this, in an organized manner, might actually help us in the future, idk. If Awor and Ax on their own (although they’re exceptional people) could make this much progress, imagine what we could do collectively.

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I have been thinking about it and it is possible that many here have knowledge that is not directly applicable to helping the community (myself included), but also most people here would be capable of learning about issues that can be helpful for the PFS Foundation, or working on issues that can be helpful.

Maybe those who have science related studies (or are starting them) could learn more about the biological implications of the condition and help people like awor who are now designing and working on the studies.

And then those who come from social sciences could maybe take part in activities like spreading the message (I see @Jaime and others are starting to move this), contacting media, creating campaigns to find donors, translating information, etc.

Just to put the example of the campaign to find donors: it is not the same to contract a graphic designer, and an expert on communication or marketing as having people volunteering to do this (that’s why maybe a register of all each person is willing to work on could help us).

Of course this doesn’t mean that people that come from social sciences can’t help on the research, if they feel capable of contributing to it, I was just puting examples.

I thought about the option of committing to a certain amount of time each week or each two weeks because it will probably be much more productive if people commit to a certain amount of time, but obviously this is just a suggestion.

I totally agree, I feel like now a very tiny amount of people are trying to move an inmense rock. If 40 or 50 of us push together with them, we can achieve great things.

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Hi, I am up to help by anyway scientifically or as “sales man” if there is need to contact people to raise funds. Or any other way.

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One thing all of you can help with is recruitment for our survey. We are still way behind on the Accutane front and the PSSD side could use more participants as well. I think we have English language forums covered, but if you are aware of any foreign language forums or Facebook groups, please ask them to join us for the survey.

I noticed that we have few Spanish speaking members or members from Brazil, India, Japan, Korea or China. I realize that language is a problem, but these are huge populations, so surely there must be affected men and women out there in the internet that we need to find.

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I have just posted a message on the French Post fin facebook group insisting on the necessity to take part in this survey.

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Some weeks ago I was trying to find accutane victims accounts on Twitter, they seem to be much less organized than propecia victims. There are also many accounts that talk about accutane problems which end up being just people discussing how to take accutane and their experience erasing acne with it.

Facebook seems to have many pages with lots of accutane sufferers.

Has anyone tried to contact the admins of this groups? In case someone has done it without answer, the next step should probably be talking directly to members of the groups or pages. In case of the FB pages, just checking who likes the posts of the page is an option to find potential accutane sufferers that are active.

I encourage those of you who have some time to contact them. Will try to contact some of them later this week.

One of the problems that we may find is that some people may start to ask questions such as “what survey?” “can you send me a link to such survey?”. If anyone wants to write a standard text that can be send “massively” to many users that covers potential questions, feel fry to share it.

Depending on the answers I get, I wil probably adapt the way I approach them.

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I have written to @axolotl about this possibility of collecting data from potential volunteers and he says that he will try to implement it. They are now working on a second part of the survey which I imagine is requiring an important amount of work.

Thanks to all the people who are offering to help, and thank you so much to the people that have already been working on the survey, all the studies, etc.

Axolotl and awor are two really bad cases of PFS and they have managed to work hard on an issue that is extremely complex while fighting for their lives. I hope this serves as an inspiration to many others.

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I have tried to contact the admins of two of those groups.
Maybe we better make a post with asking who has the same symptoms as we do in those groups and PM with them… idk!
I have also looked for posts of people who’s problems are the same as ours and commented the survey link… but nobody seems to get how important it is.

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Would it be helpful to have a pre written block of text with links you could share with admins of those groups?

Could you write one and PM it to me and I’ll look it over for you with the admins?

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It’s a great idea! Everyone must mobilize as much as possible according to their energy, so things will progress more quickly. One can not always wait for the work of some but to regroup all the potential forces in each country.

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Guys, when you tell people to take the survey, I think it is good to point out to them that they do not need to fill out the whole thing in one sitting. You can work on it for 15 minutes here, 15 minutes there and it saves your place. Just thought I’d point that out because some people might be daunted by it at first but if you just do it when you can it goes pretty quickly.

People will spend time discussing the benefits of such and such supplements for hours, mostly to no avail.
Taking time to make a difference seems too much for people…
How may people visit the site?
How many completed the survey?
We need to understand that numbers will make the difference.
For awareness, for science, for other dudes not be fucked up by these drugs…
We should learn from our mistakes or our older PFS sufferers hit and miss…
I am French and I believe PFS sufferers need a bigger network to make some real difference…
I read some posts indicating a cure would be here in 2019…
We are nowhere near this, let alone explain the mechanism of this condition…
I feel in 10 years, another guy will be reading this and reflecting it has been 20 years…
I will be dead by that time…
Either by suicide or consequences of low T’s…
We need to know what direction to take:
Cycling tribulus, discussing if CD is a fraud,
Dissing candida, microbiome, losing energy at arguing or taking action towards better days…

Ps: I came in peace :). But I have spent two monts going through this site…
We need focus, unity and good old common sense.

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