Is Propetia Help the Online Patient Support of the pfs foundation and financed by the donations to psf foundation, or is Propetia Help an independent organisation? Is our staff in touch with John Santman and pfs foundation staff?
I would definitely class John Santman as a victim too , considering his story
I’ve heard rumors it doesn’t really exist anymore and all of them are gone the only one who is left there is Phil Roberts…Don’t know how true it is but they seem very low key compared to 9 years ago when the Foundation was first started…
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Does this mean the only people actually representing the cause are Axolotl and Sugarhouse?
Just asking, I’m trying to understand.
PropeciaHelp is a separate entity entirely provided and financed by the staff (and a friend). The same people also operate PFS Network for outreach efforts.
Both, PropeciaHelp and PFS Network, are independent from the PFS Foundation, but there is communication and collaboration.
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You are right
He lost his son.
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How many peopel does PFS Network count?
So propetia help is organized and financed by @Northern_Star, @axolotl and @Sugarhouse? So you put your own resources here in. Hope @Sugarhouse will connect multiple donators. He allrady managed Start ups. This seems to be the most important topic of the future. Are there any rare deasises initiatives support resources available by the WHO and other organisations?
I thought the pfs foundation is a organisation with great resources and supporting clinical study s.
I’m really shocked about the News. I thought there ist a big donator list and you earn money for your Work and there ist money to support science.
And last question, is carismatic John Santmann really out of the foundation.
Seems like the only ones who are interested in figuring out our condition any more are the Italians, Dr. Melcangi et al.
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Yes I find it odd Philip knows nothing but I can simply email Khera I find out Baylor is complete. Makes u wonder how interested or involved they still are when I can find out all this from a simple email but they don’t know??
But John Santmann ist still listed as CEO. Why should he give Up. His son died from pfs.
So Khera and Melcangi invested many “manyears” in their studies and maybe the team ist going on.
But there ist someone need, who fights for the project.
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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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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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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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.
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…
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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:
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!
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Tout Ă fait Etoile polaire !
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!
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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: