Just curious so we all know what it takes to get information out to the world.
Small to medium sized human studies like you mentioned run between USD 100-500K depending on total number of participants and complexity of study. Complexity drivers include amount of raw data being produced and complexity of analysis required to draw useful conclusions from this data. For example, analyzing full genome gene expression data is very complex if the objective is to understand which pathways are affected and how those could be interacting. The scope of clinical assessments can also substantially increase the cost of a study. Larger scale studies by the above criteria can easily reach the seven digit mark. On the other hand, simpler studies where only a few factors are looked at, or simpler ones performed on animals, can be done for significantly less than 100K.
Unless some very wealthy individual is prepared to invest heavily into with PFS/PSSD/etc. research, it will be important for us to tap into some rare disease funds in the foreseeable future.
As many of us know by now, the down side to academic research is the glacial pace, risk of political/monetary influence by industry stakeholders and biased peer reviewers. In an ideal world, I would like to be in a position to get the required research done on a purely commercial basis, free from any academic constraints. This is how pharma companies work to produce cures, and ideally how we should go about to get moving faster. I have the contacts, we just need the money. If you who are reading this have significant funds to invest, let me know. I am 100% convinced that it will be worth it for you.
Can someone who has a twitter send a public tweet/message to Elon Musk to look into this? He actually reads tweets at him, maybe a bunch of people could tweet him. Tell him all men are likely to take prostate drugs at some point in their lives and the disease could happen to anyone including him.
I’m not sure how effective of a strategy that would be, but he did suffer from hair loss and got a transplant and most likely takes propecia himself. He was also on the joe Rogan podcast who is staunchly opposed to propecia so it might be worth a shot. Reaching out to rogan too might be beneficial. I do not have a Twitter though
Thank you for the insight, @awor. I appreciate it.
It’s not a terrible idea to ask philanthropists/celebs for help. It’s unlikely to work, but it won’t hurt. We just need to ask the right people such as men with interests in finasteride like Joe Rogan as someone mentioned. But before we all go spamming Elon Musk, we should probably have someone with better representation ask him formally. Someone from the Foundation itself.
Or have the Foundation sponsor a group outing to Vegas where we play roulette and craps for a cure.
There are also a lot of great health podcasts like Peter Attia’s. He talks about some of the most complex and rare phenomenon in the medical world, and he is highly respected by the medical community yet understands how little we actually know. The podcast can be technical at times, but well worth the listen:
We should also reach out to hedge fund managers. I know many of them have foundations that donate to research.
Great post and great ideas, keep going
@SmallBallsBigHope, good question, and I totally agree that there’s no harm in sending out an SOS. The consequences of having no solution to this condition far outweighs any shame some of us might feel over going public about it or resorting to what amounts to begging for help.
@awor, thanks for a clear answer. Looking forward to the patient communities being united soon and pooling resources. I have heard there are potential benefactors to the PAS community with substantial financial means. There simply hasn’t been a decent opportunity to fund research into the condition in many years.
One celeb could easily fund that and Philip also said some have it but won’t say which ones and they are not public with it I suppose…Also the sent an email awhile back looking for someone to go on Dr. Ozs show about pfs…They were taping back in Febuary and he was doing a segment on the congnitive side of pfs and not so much the sexual side effects…I guess they didn’t find anyone to appear on the segment…
The foundation knows of celebrities out there with PFS? Crazy. Disease does not discriminate. I wonder if that celebrity has donated or given us funds before. I know if I won the lottery today I would give everything I could to the Foundation.
As soon as I pay off student loans and am sitting comfortably, I’m excited to be able to provide generously to this Foundation. Getting my health back has no price tag on it.
A small-ish idea I have is setting up a drop shipping site where you could make passive money and have profits come straight here. Does anyone have experience with Shoppify? I have a friend who made $25K his first year from those drop shipping, and he’s already a full time engineer.
Amazon FBA I hear is an easy way to make $40k/ year at minimum with relatively little work if you spend the time learning how to do it the right way. It involves buying products from China (AliExpress and Alibaba) and listing them on Amazon. You have the product shipped directly to Amazon and Amazon basically does all the work:
-warehousing the inventory
-packing and shipping
Also let’s not forget Ashton Kutcher admitting to stopping fin for health reasons. He’s an activist investor and a very smart guy. He might donate
I’d be highly surprised if the foundation/the mods have not already reached out. This would have happened long before any of the community projects.
Let us hope the Baylor study isn’t afflicted by any of these maladies. Let us also hope that what you predicted in October 2017 will come to fruition in 12-18 months from that past date, namely that we will soon have an understanding of the fundamentals of what PFS truly is.
Has anyone ever thought about going to the banks that actually fund Biotech. They also, many times have money earmarked for rare and orphaned diseases. There are dozen of such institutions with Healthcare divisions that have many billions in holdings. Names like Cowen, Jeffries, JP Morgan, Citi, Bank of America etc… They are hundreds of such institutions that could be called on who could potentially help fund a study or multiple studies. These same institutions even give millions away for hurricane victims, doctors without borders, etc… Has the foundation ever worked with actual investors who have money for philanthropic work as it relates to rare diseases?
Seems like that would be an easier sell if some sort of report or findings come out proving some basics on what is actually happening to us first.
If a study was “designed” thats all that would be needed to go to actual hedgefunds and banks to get some rare disease money. Many of these funds deal with total startups and not Pharmaceutical companies with commercial products.
Here’s an example of a foundation set us by Stanley Druckenmiller, a hedge fund manager who managed the Quantum (Soros) Fund for years. The foundation donates to medical research.
Thats a tough one… any foundation that doesnt have a board of directors appears more like a tax shelter…which is the vibe I’m getting from that wiki and other research, is kind of hard to target. I see they are a partner with Blue Meridian but they are specifically for impoverished children. There are tons of Healthcare funds. Find the ones that deal primarily in Biotech and have multiple billions under management, and you will find some money for PFS research.