What a bizarre dichotomy you’ve constructed. I can simultaneously have faith in the currently funded study as well as hope for more patients to do sensible things which will speed up the process of getting us out of this. How are those two things at all mutually exclusive?
You don’t want to see more patients donating, speaking out and taking action?
It’s a big move for people to abandon anonymity and could backfire both in the present and future. I personally can vouch for this. Also, there was a flurry of major media channel coverage and nothing really happened on the back of it.
I agree about funding but most members were either transitory or are now living near normal lives, putting aside money for themselves. I gave a grand to the foundation and boy was that a mistake.
It sickens me that there has been no successful litigation against Merck for even a few million that could have funded research though. A broken system.
Yeah it’s an incredibly unfair situation. The system is incredibly broken. But we have no choice but to push and do everything we can. It’s our lives at the end of the day.
I wouldn’t say the grand you gave to the foundation was a mistake. Baylor was an important study.
I never considered donating to the foundation because they did not propose any clear path ahead, both in terms of litigation or research.
I feel the PFS Network is different and I gladly donated and hope to have more funds available soon to donate more. They’re organised, have a clear strategic roadmap, top researchers, patient stories…
I don’t think we should underestimate the power of being organised. This lends a lot of credibility to the stories, PFS itself, but it’s also easier to stimulate further research or even legal action I’d presume, should the opportunity arise. The difference with the foundation is that the network is actually interested in finding a cure.
I agree about speaking out though and admit I’m deeply ashamed to go public with this, even though I understand how important it is and I commend everyone who has done so.
The current project is a long term observational study that MIGHT provide insight into what’s happening in our bodies. Depending on what they find there MIGHT be another direction to go toward investigating treatment. Then again there might not.
Yet you keep posting as fact that more money and patient action will speed up the path to a cure. You have absolutely nothing to base that on and insisting on it sounds like you’ve completely dismissed the pace and focus of the project. So no I don’t think you have faith in it, you have faith in an imagined outcome and what you’ve imagined it will take to get there.
If patients want to put money in PFSN’s bank then they should…in the event the study branches out in a direction that needs funding then it’ll be there. Good. But the only thing I want to see at this point is for the sample collection to get underway.
Sample collection can progress while we simultaneously raise funds for subsequent or parallel studies. Again, why is this somehow mutually exclusive? Is there some law in the universe that says we should only do one study at a time, or that we should stop asking patients to get involved simply because one study was funded?
I post that more money and patient action will speed things up because that is an obvious fact. We are limited in our progress due to a lack of funding and awareness. Mostly the former. It is that simple.
I find it remarkable that you are seemingly annoyed that people want to encourage more action taking and support for research which will speed things up. Amazing.
It’s not. Your claimed faith in the research and insistence that there’s a financial path to a cure is.
I’m going to make this simple for you.
I am happy with the current study. I would like to see more studies take place, as this speeds up the rate of progress and scientific understanding. In order for more studies to take place we need funding. Ergo, I expressed hope for more patients to step up and take action.
My desire that more effort goes into efforts to uncover more about OUR condition does not evince a lack of faith in the currently funded study.
Hopefully this is clear enough for you. Maybe you can now coherently explain to me why you’re against more funding and attention going into the disease that you suffer from.
I’m not against funding but statements like “If we collectively did that we would be on our way out of here” and “Then we could actually get out of this quickly” are dismissive of actual research and what may or may not come of it.
There are no guarantees with research but I can guarantee you if all of us were taking action we’d have answers much, much sooner and from there we could begin trialling treatments with an animal model. The pace of progress is dictated by the funding we have.
Normally I don’t like hijacking threads but hijacking an ‘end of baldness’ thread is ok in my book, hopefully nobody’s too disappointed.
Anyway…There are no guarantees with research but I can guarantee you they will report their findings and if there’s something to build on we’ll build on it and if there isn’t then we won’t. The pace of progress is dictated first and foremost by the nature of the thing which is still TBD. Then yes, funding.
We could do a genetic study simultaneously, same time as the currently funded study. This could yield other relevant findings for us. The more the better in my view so we can bring closer the day we get out of this hell
It’s worth noting how TGF-B is most likely affected in PFS as well (as per Baylor).
So any studies on TGF-B regulation and/or function could potentially be beneficial to us as well.
Just gave this article a read. And I think @Cbrandel made a great point. This research has interesting implications for the future of medicine - and presents potential insights for ameliorating apoptosis, not just for hair loss. And I frankly don’t believe that it presents any serious threat to us as patients.
Also, FWIW, I don’t see Finasteride sales slowing anytime soon – unfortunately for the people who will inevitably be negatively impacted by it. Nor do I see sneaky marketing strategies and a total lack of informed consent changing anytime soon regardless of whatever minor label changes are achieved.
Also, all the back and forth over what may or may not come from this study or future ones etc. to me is moot. Scientific progress is scientific progress. There are no shortcuts but we can make decisions now that could speed things up or make things easier for ourselves in the future.
As has been repeatedly said, we have expert scientists involved in this now and are making steady progress.
I say all this not for my own benefit, or to argue with what’s been said here, but to hopefully seed some optimism in a patient who may be struggling right now. And it’s not blind optimism, there are practical reasons to be hopeful for the future.