Is Propetia Help dependent from the pfs foundation or an organisation by it's own?

General Discussion
#12

What @Northern_Star has said is indeed accurate - PropeciaHelp and PFS Network are the same people, but different entities that are focused on different objectives. Through PH we aim to give the community a platform to share their experience and find support, and through PFSN we aim to advance awareness and research into PFS.

PFSF is a separate organisation, but we communicate regularly, have a good relationship and collaborate where possible. We have mentioned this in our 2021 research thread, that the Foundation will assist us in fundraising when the opportunity is ready to present. They are absolutely still active.

Regarding the only people being interested in figuring out our condition being the Italians, that’s also not true. Axo has been meeting with dozens of scientists over a period of multiple years, the overwhelming majority of whom are interested in helping. But as we have mentioned elsewhere, we simply cannot prioritise every study that is proposed to us if they are not the right study, due to the scarcity of resources that exists in our community. Many patients do not have large sums to contribute and therefore we need to ensure whatever we present to the community contemplates the complete symptom profile, uses cutting edge techniques, is appropriately designed and is executed by those who are pre-eminent in their field. We work every day on solidifying the most appropriate study to present to you all.

We have mentioned it on many other threads, but there is really no reason to spend so much time worried about the Foundation, Baylor or anything else that is completely out of our control. We have presented many projects for patients to get involved with, which amount to the necessary small steps required to start to climb our way out of this problem. These include putting aside money for research, speaking publicly on our new podcast series which we are currently filming and asking your family or friends if they can assist with our Family Advocacy Group. I also posted recently about looking to expand our group to include more volunteers, for projects that may not even exist yet, so if you would like to get involved please reach out to me privately.

Take care,
Mitch

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#13

We need a succesfull fundrasing campaing. If I remember correctly, when @Papasmurf posted his story on Facebook a lot of people reached out to him and offered to help with a donation.

How about a GoFundMe with a video we can sponsorize?

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#14

No worries, this is something we are working on and what all the social media content we have produced and are still producing is for. But fundraising works best with a clear goal to fundraise for. That’s something that we will hopefully be able to present in the next few months.

You better start saving now!

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#15

Are there any wealthy guys on here,? It would be interesting to see what we’d get from the community alone. I for one would donate quite a lot especially I felt confident in it being spent well.

#16

The important thing is that each victim, each association, each group… communicate together, organise themselves in order to better fight the cause that brings us together. Wherever progress comes from, the most important thing is that it happens, the rest is secondary… It seems to me that we have no time to waste on petty quarrels between groups, countries,…
The wait-and-see attitude must stop, some victims are fully committed but, unfortunately, far too many are waiting for others to do the work. We all need to show up and declare that we are victims, shame is not on our side.
Our cause appears to be “small” because many do not come forward, do not even get listed. How many of us are there in reality if we consider (as the health authorities say) that the reporting figures represent only 5% of the actual victims?
We can all make a contribution and save precious time. Of course, we’re going after something bigger than ourselves, but so what? What, who are we afraid of? What more do we have to lose?
A few dozen people around the world are investing all their time for thousands of victims, we can do better…

1 Like
#17

I think this is a common misconception. People see the PFS Foundation, an American charity, and they think that somewhere there is a big PFS Foundation office over several floors in a skyscraper with hundreds of employees and tens of millions of dollars in budget who will take care of everything. That’s not the case. The PFS Foundation are just a few people volunteering for this issue who have registered their organization and have a bank account as well as a website.

There is no knight in shining armor who will rescue us. People need to understand that nothing is going to happen unless we make it happen. If people here do not participate in projects and do not donate money, nothing is happening. If we are not doing anything, who will? Most scientists do not even know this condition exists. We talk to people in relevant and adjacent fields and they have no idea! Despite all the progress over the last decade, we are still not on the radar.

Obviously, our end goal is to firmly establish this condition and make the scientific community aware of it, so that sooner or later science will take care of it on its own. But were are not there yet. We are pushing a big fucking rock up a mountain. Once we reach the summit it will roll down the other side on its own. But we haven’t reached the summit yet. It’s still quite a grueling journey up the mountain constantly fighting gravity and, quite frankly, not everyone is pushing hard enough. But we can get there if we all do our part: Every contribution counts.

See here for the current status:

  1. Research in 2021
  2. My involvement with PFS Network

What each and every one here can do:

  • Save money! Sooner than later we will need some cold hard cash for what we want to do. And while the staff will contribute significant amounts and we hope to access grants, money will also have to come from the community. If you have access to meaningful funds, please send us a message. If you have disposal income, please consider saving. For example, you could set-up a monthly amount to save on a separate account for this purpose.
  • There are several use cases for our survey data to contribute directly to meaningful research. The more data we have, the better. If you have been suffering from persistent side effects for at least three months since ceasing treatment with Finasteride, Dutasteride, Isotretinoin (Accutane), Antidepressants, Saw Palmetto or other substances with antiandrogenic properties, please participate in the survey: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate
  • Our social media content has been a success. It will rank even better if all of you subscribe to the channel as well as watch, like and comment on our content. Interactions are the currency of social media.
  • Report your symptoms to the authorities. They won’t know we exist, if we don’t raise our voice, so make yourself heard! https://www.propeciahelp.com/report-your-propecia-side-effects-to-drug-regulatory-agencies/
  • Participate in our podcast!
  • If you are “out of the closet”, ask your family members if they want to participate in the mentioned in our family advocate group.
  • Reach out with everything else you may want to contribute.

Some of these things may look minor on an individual basis. But volume matters! If we all do the small things, combined they become big!

8 Likes
#18

Tout à fait Etoile polaire !

#19

I had a reply from the British Medical Health Regulation Authority and they advised that they’ve only received a handful of yellow card submissions. I find this very disheartening and this backs up their overall stance that against the millions who benefit worldwide those experiencing side effects are quite rare. This underscores the point that many sufferers are NOT reporting this to the authorities. No wonder were in a hole. This is one of the data tools used to assess drug safety. Embarrassing from our perspective!!! A huge wake up call for many. Get off your arses and report your sides. You owe it to everyone, yourself and the cause. No one will give a shit if there’s no evidence of reporting. God damn it 20 years in and only a handful of submissions. I despair I really do!

5 Likes
#20

Dear @Northern_Star, @Sugarhouse, @LazarusRy can you list again the links to the pfs foundations, US, UK, AUS and EU online boards of sideeffects. I know some links are allready listed. Maybe you can make a new Post for the entire community.

The German Board for sideeffects:

https://nebenwirkungen.bund.de/nw/DE/home/home_node.html

#21

LazareRy, You can ask to receive the grid of official figures for your country. I did it for France and I was a bit disconcerted because we have a difference of about 500 victims between our association and the health authorities.
We absolutely have to find a way to make everyone understand the interest of this process, which is also anonymous.
Soon, with the agreement of the victims, I will have the right to do it for them.

1 Like
#22

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#23

I will formulate a counter reply to them hopefully with continued input from @Greek and @Scotsman who helped with the original draft. I’ll also include the grid request. Thanks @lacreland21. I’d be interested to see how many of the 17.8k reporting sides on the foundation are from the UK. That’s great news that you can submit with consent.

3 Likes
#24

This is on the front page of the website under “Resources”

#25

Not everyone is from UK/US… i wish the “report your side effects” added many other countries as i am not able to find out how to report the side effects in my country.

#26

It will be hard to gather a consisten ammount of people.

The more embarassing the sides, the less likely people are to report that.

And beyond that, I bet there are a lot of people around the world who haven’t made the link between symptoms and Finasteride use. How many times have we seen that?

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#27

Dude it’s literally the first two links. EU based agencies.

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#28

There’s a list of world wide regulatory agencies at the link I gave. If your country isn’t listed, please find out the contact details and I’ll arrange for them to be added.

We are all patients here, so when you’re asking for something simple to find like this, please look for an answer before asking someone else to do something for you.

#29

I didn’t ask anything to u to do it for me. Just had a doubt in my mind considering the levels of side effects being reported in my country being too low. Don’t answer me if u find it too stupid to answer then, someone else may answer, no need to be cynical all the time.

#30

Not everyone is from your EU or US or Australia or Canada, dude. I didn’t read about the south asian countries in that worldwide list, my mistake.

#31

I don’t want this to be a negative interaction, I think you seem like a nice guy, and I must have misinterpreted your post.

The truth be told, I am struggling a bit with this place. It has been a lot of work to keep positive, to try and he helpful, etc.

When I saw your post my reaction was “why doesn’t he say “I’ll find out how to report an adverse reaction and then that can be added to the document””? I interpreted your post as “I wish someone would do the work for me”

Sorry if I misinterpreted, I was just feeling a bit worn out.

1 Like