PFS Database and Newsletter

General Discussion
#1

Hello,

I am planning to make a database of men with PFS.

The database will just include some basic info such as contact email and location (state and country). The aim of the website and database will be to help us organize ourselves locally. We will be able to work together in our locations to get studies done and even possibly raise awareness.

The other important aspect of the site will be a fortnightly or monthly newsletter regarding the latest developments in relation to PFS. The newsletter will also create awareness of what people can do to move our case forward.

We have learnt a lot about PFS over the years by all the experiments we tried but now we need to take this a step further and unite our powers in order to really investigate the root cause of this problem.

Many guys join up here make a few posts and then disappear for years. We really need to make sure everyone stays informed about what they can do to help.

I am looking at organizing a few basic studies over the next coming months and these studies will be funded by crowd sourcing. I believe there are thousands of guys on here. If say 100 people could put in 50 dollars that would be enough to do a basic hormonal study. Using this model I think we could really get a lot of research done about PFS. We would be able to easily provide the funds and the participants needed to have studies done in many countries.

It will be vital to get as many men with PFS as possible to join up but I have emailed Mew and received no reply as yet.

If anyone has a good name for such a website please let me know. I would also like suggestion in terms of what data should be included in the database and what info should be contained in the newsletter.

#2

Splitting resources is not a good idea. When there is news to report, this forum as it always has, will post and email about it. Diluting these efforts by segmenting and directing users to a separate website is not beneficial to the overall cause as it fragments efforts and overall userbase concentration.

I admire your efforts to drum up media awareness – in this case, I encourage you to contact as many media outlets as possible about PFS, and point them to PFS Foundation, studies and this website to make your point.

Cheers.

#3

Hi Mew,

It would not be an attempt to split up resources. PropeciaHelp would be used for all discussions. The thing is that most users do not want to come on here every 2 weeks and look though thousands of posts trying to work out what the latest news is. Many actually find this depressing and as a result stay away from the forms. We need to keep these people in the loop and aware of what they can do to help progress our cause.

And also it is very hard for us to organize studies locally. Now I am in Australia it would be very helpful if I could contact all Australian users so we could organize a study locally here in Australia.

Thanks

#4

Users can easily subscribe to posts and threads on the forum to keep abreast of latest forum posts, they can have a daily or weekly digest delivered to their inbox. This is all part of the forum software, there is no need to create additional work in compiling info.

Cheers

#5

Yes they can do these things. But they do not. I am sure you can look up the stats. How many people have become inactive here? How many people keep up with the latest developments? Very very few. I think that is the reality. This is a real problem.

This is a discussion forum which means that it will contain lots of speculation. I am sure we can agree on this. Most people simply do not want to look though hundreds of posts trying to work out what concrete developments are happening in the PFS community. We need to keep people informed about all of the concrete developments that are happening in the PFS community. People need to know exactly what is happening with the studies and what studies are planned.

#6

Propecia kills maybe…