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!