People who are very capable, wealthy, and have a long history of philanthropy. As of now, no help is needed. It’s just a long process with unforeseen obstacles.
Okay, so this is not be done by a member of the forum?
No.
How much has been donated?
What is being delayed and why is this being caused?
No further information can be disclosed at this time.
When there is more info, there will be an announcement. In meantime, please be patient.
What are the chances that this research will actually cure us? I know valuable information is being uncovered in these studies but is it realistic that they will find something that will reverse our side effects? I mean if billions of dollars and years of research going into much more common illnesses like diabetes or alzheimer’s and they don’t have cures for those, what are the chances we’ll be cured?
I would say our chances are abit better in the sense that ours can be more easily traced then those since it was drug induced. No sure thing thou of course but… At least we know the nexus of all this crap is finasteride.
One thing I don’t understand is that how this hypersensitivity resulting in down regulation of androgen signal response could have happened in every cell of our genitals. So EVERY cell now has been changed? That seems strange to me. I feel as though there must be some signal (some hormone, neurosteroid, even electrical/nerve related) that is not being sent down there. I know some people have been diagnosed with neuropathy, but that wouldn’t explain the hormonal problems either. It really really sucks this problem is so damn complex and elusive.
Broken pecker, you’ve had this for 6 years now?
That same thought crosses my mind alot. I have no background in medical research either but it seems extremely ambitious to think we could figure this out and treat it especially considering the limited resources. Obviously we have to try and hope momentum keeps building and we get some miraculous breaks.
we have to combat the side effects are not now the case.
what?
for now we can not fight the cause but if the side effects.
Dgreene,
Yes. Last time I really felt like my normal self was 6.5 years ago. Hard to describe what its like feeling like something is off everyday for 6 years straight. With only brief periods of feeling even somewhat normal every now and then.
Remember awor said we need to ‘ride the coattails’ of existing research.There are prostate cancer drugs out there that reactivate silenced AR signals in certain genes. If those are the same genes effected by PFS then we already have a potential treatment.
Do you really think this is possible - would be unbelievable! I don´t think there is a medication out there yet - there are more in progress of research for this, or am I wrong?
If we start collecting money, there will be more power and research. I hope we can cure this awfull disease.
Better to be hopeful and positive about this aspect instead of wallowing in despair… I’ve done more than my share of “wallowing” but I am hopeful we are getting closer to figuring this whole thing out. And one day our unique condition will be classified medically and even in some small part we may have helped people down the road. So yeah… The work is being done as we speak that we finally might be cleansed of this curse.
Are you still looking for 2 more patients?
Any news on time frame for publication on first study yet? Its been a while.
Yes, would be great for an update. I realise you can’t give too much away, but useful to know if all is still on track.
Could Awor or someone else please clarify how our problem is not neurological, but yet we have a problem with neurosteroids? This doesn’t make sense to me.