I had an idea floating in my head for a while, and I am now starting to perfect it (talking to lawyers, finding founders and so on). After talking and talking to some people with far more experience in finance than I have, it looks like it could become a reality!
I would like to start a charity which would be focused on PCa research (as first step, the other cancers if cash allows).
Imagine a new kind of charity, focused empowering both patients and researchers. Instead of spreading funds thinly across a wide range of initiatives, this organization would zero in on key areas where targeted investment can have the greatest impact.
In my mind, it would focus on :
1 - Drug repurposing trials
2 - Phase 1 trials in general
3 - AI for healthcare development project
Everything that could be reachable by a charity, phase 2 and 3 trials would require a ton of money of course.
The projects would be selected by a committee of researchers, possibly young and hungry, people who believe they can make a difference, not focused on money. I have a number of connections in the research world that would help to find the right people.
My idea is that this committee would select a pool of promising research and the members of this charity (donors) would vote for where to invest the funds raised.
I have skin in the game, and you are in my same condition, so I need your opinion. Honestly, even if they have the best intentions, people who are not this close to cancer really cannot understand all the implications and the hope we need (based on something solid, of course).
Ok, since last week, even if my PET scan went well (only a slight improvement this time but still well) and everything is under control at the moment, I have fallen in a kind of "sadness", because I have a feeling that maybe some really game changing treatment won't be available before my time comes. Fine.
As some of you do (and I know that you do!*), I talked to my cancer and I said "I am taking you down. Maybe not me directly, maybe someone that will come after me. But you are going down!". And that's when I have started to put together this idea. I have been thinking about it for a while, but this was the moment where I actually started to put all the pieces together.
What do you think about it? You can reply here or you can send me a private message if you prefer. I am not asking if you would donate money, but what you think about such an initiative, what you would suggest and so on.
Thank!
Max
* if you don't do it, pretend that you do it, so I won't feel like an idiot!
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Maxone73
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I think it is an interesting, good idea but it is a very big thing to take on and organise! Professor Chris Evans here in the UK is trying to set up a big database of cancer initiatives and treatments but it will be for all cancers and it does not seem to be moving very fast. One of his ambassadors is Andy Taylor who unfortunately also has prostate cancer. It might be worth contacting them?
Yes, for sure it would be great to get in touch with them! I would start with prostate followed by breast cancer as they are the ones who are being more explored when it comes to repurposing and also AI applications (and of course I have personal interest in prostate cancer!)
I think i like the idea since AI already being used to locate the repurposed drgs. I would also hope it includes genetic markers especially real time proteomics for the tightly selected warriors with certain somatic and or genetic mutations.
I would want the phase 1 trials include delivery methods besides the usual safety, dosages and side effects.
In order to manage costs i would also suggest the patient warriors must submit some of their pertinent medical tests like genetic, scans, blood work. That way the trial can focus on specific tests that aren’t generally ordered.
I think this is a great idea Max… absolutely fantastic. I think also somehow linking it up with people like us who’d be up for taking part in clinical trials would be good (you’d mentioned that many fail for lack of uptake)… a forum like this would also be a great place to make different trials known… and then maybe we ask our MOs.
Also… I talk to my cancer too… almost every day, I tell it I’m going to beat it, that it isn’t welcome, and that medical advances will along with everything I’m doing will get rid of it. (Maybe I’m mad… but I feel I have to tell it to get out, that I want to live a healthy life without it.)
A question re your Pet scan… I have a Pam’s pet scan coming up, to give us a baseline idea of where things are. My PSA at last reading was 0.01…. Does that mean it won’t show up a lot of the cancer, as it’s ‘asleep’? Do you know?
Sorry you’re in this sadness phase… Hope it doesn’t last too long. When I get like that at some point I just say, I’m going to fight and beat this fucking thing, and just steel myself against it. It helps me. I don’t think it’s denial… more, that I’m going to keep on fighting and that none of us know what’s around the corner. Though it’s fucking frustrating waking up with damn thing every morning. But getting out in nature helps me refocus onto something else.
I am in fighting mood, proactively sad! I think we can do something if we push together, few selected projects could be reachable. About the pet scan, with PSA at 0.01 it was still able to find some active metastasis, slightly less than before. Non such a great improvement as before, but that was expected by my MO. He said that it's not like they have to disappear to consider the cancer stable at the moment.
Hi Maxone73. I personalized your thoughts (as in what's in it for me) to take an initial stab to answer your query. I concluded that there is little to no benefit for me personally. I have comorbitities, so trials are out. Drugs are always 10 years away. I already use AI to address my specific queries already. I really hope you prove me very wrong.
OK, so then I moved on to the long term outlook - I may not see it come to fruition, but I worry for my sons and their sons. I asked my boys. They are generous and obviously this cancer hit's close to home for them. Their two responses were "not enough detail to form an opinion" and "Christ, not another cancer charity Dad. Too many already."
I hope I'm not insulting you. It's an admirable chase.
They sound like wise guys! I have not made myself clear enough about AI, sorry, I am not talking about AI like chatgpt, which is generalistic and simply not used by pros in any way (doctors use far better tools for example to get help to read pet scans) . I am talking about specialized solutions that allow to select drugs for repurposing, create drugs and so on. And honestly I agree that there are too many charities about cancer. But there is no charity that I know that empowers donors this much, plus there will be more details hopefully soon, that will make it even more different! Stay tuned and thanks for the answer!
I dunno if those AI tools are available yet for doctors to read/ validate or diagnose. I recently read there are somewhere in the neighborhood of 7 in the experimental stage (Huge monetary upside). The one Mayo is testing has mixed reviews. A critical gap is pathology samples (images) aren't digitized. They just dropped several million to build a robot to digitize theirs. For the tools to be accurate, they need data data data. So that one is coming and I'll be interested in how a non profit charity would work with that functionality, now or in the future. I know you're in planning stages so you need jerks like me to poke holes so you can have answers and overcome them in advance
Local small charity's can have a big impact.Your basically saying you'll do what all the other charity's set out to do, before they turn into businesses....
I know some charity's in the UK are charity's because 1p in the pound go to charity, where the rest goes.....
Good to have a focus
Good to have a project
Good to be around people and talk.
Your charity sounds good idea.
If you got much set up, you can get wheels turning and steering it
let' s say my idea is to create a business behind the charity, but such business would amplify the donations. I will explain in a better way soon, when I will hopefully have more info! (the bad part of asking people/consultants to volunteer their efforts free of charge is that they are often more than willing to help but you are not exactly a top priority for them! 😄😄)
This sounds like a valuable project. Structurally, you speak of a charity (non-profit) and speak of an investment. The investment suggests monetary returns. That's not a 501c3. If you meant by returns, the purposeful results of the efforts, that's another thing. Having experience in both structures, success comes with focus on one or the other. I don't want to throw shade on your efforts, since such a valuable project would require great effort, just that your personal resources might be best served with a clear and focused vision from the ground up.
Ah great that you have experience! I have a question for you: suppose a charity buys 10% of a startup (or any other thing that would get the charity some money), and the "investment" goes well. Everything that increases the value of the charity stays inside the charity and it's used to fulfil its purpose. Would it still be a charity? Or legally I should use another name? In the UK, Cancer Awareness Trust owns a music label for example.
I don't know the law in the UK. Non-profits in the US can have profit centers - ie. museums with gift shops - as long as they act as subsidiaries and do the books properly. All I'm suggesting is to first establish a focused entity so your efforts and resources aren't diffused.
What you are suggesting sounds sleazy. Are you suggesting the creation of a charity whose purpose is to invest in early stage research, and then harvest a percentage of their profits? Is this a tax evasion plan? Is this a way for you as CEO to evade proper fiscal oversight? Maybe it would be "legal," but iit surely would smell. Seems like a better plan is to create a venture capital fund dedicated to early stage prostate cancer focused companies. Simpler, smarter. And, you would find fundraising much faster and larger, with the true possibility of accelerating research. Based on your stated background, you would need partners who truly know what they are doing. The only downside for you is that - given your stated background - you would be less than qualified as a CEO for this. I suggest that you enter an MBA program to gear yourself up for this task.
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Alicia Morgans, MD, on PCa in Older Men – Determining frailty or fitness will help guide treatment decisions, MedPageToday, 11/27/2023
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