Ideas on how to raise 100M for PFS research

General Discussion
#1

A great deal of the day I am always thinking about what we can do to get out of PFS.

So far about 2 million dollars in 8 years have been collected for PFS research. Studies were good, but to solve a disease 2 million is nothing.

The the Michael Fox foundation collected more than 1 billion dollars for Parkinson’s research. https://www.michaeljfox.org/

The ALS association raised 115 million dollars for research with their ice bucket challenge in 2014. https://www.als.org/

The more I think about it, the more I believe we need to come up with very creative strategies on how to raise money from outside our small community. 2 million is good but I think realistically to see a change we should aim for 100 million dollars for research in the next 10 years. Of course this money can’t come from our community alone. So what can we do?

1.) Create a viral campaign movement:

The ALS association is a good example on how to raise more than 100 million dollars with a movement. Of course we cannot copy this, but we can think of ideas that could be turned into such a movement.
Still it will need a lot of luck and the community would need to engage with this to get something like this organized. With the very few proactive members that our community can show up with, it’s probably doubtfully to achieve. But it’s worth a thought.
Another disadvantage for ALS was that the movement was growing so fast that they had to employ a lot of staff to keep up with the donations. So a big part of that 115 million dollars went into personell costs.

2.) Creating a charitable company:

The other more controllable option is to create a company, where the profit goes into PFS research.
I hold this for the most achievable and controllable option.
My question here is what business could result in more than 10 million dollars of yearly pure profit (taxes, personell costs and other running costs already substracted)?
I have a few things in mind but would like to hear your out-of-the-box ideas to get more inspiration.

Let’s discuss your ideas!

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#2

Let’s discuss your ideas!

Let’s not. This place has more than enough “ideas” [such that they are]. This place needs ACTION. Direct Action. We’ve wasted years, over a decade, with mental masturbation. No one, minus a literal few, have gotten off their asses and actually done something.

Here’s an “idea.”

  1. Do something.
  2. Tell others you are doing it and are going to do it with or without anyone’s help.
  3. People might or might not assist with your efforts. Who cares. Be a man with conviction and do it.
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#3

How do you raise that kind of money for a disease that doesn’t exist?

How do you prove the existence of a disease with out raising that kind of money?

#4

If you believe it or not, I do.

I do tell about my actions, but not on this forum for certain reasons.

And I mean that very serious. I have already founded a legal entity for PFS and I will do so again, because it is necessary.

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#5

reaching out to companies and investors that compete with fin/minoxi/ssri’s (sage)/acutane etc

talking to VC’s investing in biotech that might be interested in the findings from the research since it has to do with longevity studies.

ive pitched this idea before but it requires a constant process of outreach, talking, and building relationships with folks so its more effective if we have more than 1 person doing it systematically.

ive asked mods for an email account from this website but ive never gotten back on that end despite asking multiple times due to loaded schdule or whatever.

either way, point is, virality is a grand slam that we cannot place all eggs in

we need to have a process that works even if it generates 10k consistently from investors or even 100k. once we have that going, we can try to test and launch campaigns and from there a couple may go viral.

but our bread and butter should be a predictable fundraising pipeline

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#6

There needs to be some kind of coordination. Individual efforts won’t be enough. Our problem is lack of collective awareness of the criticality of getting research done, not an overabundance of ideas on how. The tragedy here is the mass fixation on quick fixes that never work. If our culture became one of finding ways to work together toward getting research performed than we would definitely get a cure.

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#7

I just noticed your name spelled backwards is Simon B, the founder of the German based PFS research project.

You’ve already done good work and I encourage you to continue.

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#8

In my opinion, this is all just a waste of time. The time spent writing it, reading it, thinking about it.

Talking about aiming for 100million is the same kind of planning as goes into asking Donald Trump to save you, hoping Joe Rogan will feature this on his podcast.

We haven’t even got 100 likes on the YouTube videos we posted. How about supporting that. How about getting behind the projects we have in place already?

https://www.pfsnetwork.org/patient-stories

Think small. Think smaller still.

Pretending that we can get 100m from somewhere when we can’t convince doctors this is a real condition is a bad joke.

All these things distract people from actually getting anywhere. This is the kind of thing I’d post if I wanted a community to fail, or make zero progress.

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#9

Hear hear.

I apologise in advance if this is interpreted as an attack on anyone in this thread, but it has to be said.

I’ve noticed comments in multiple threads recently about “needing to work together” and “let’s all do something”. It’s a theme that crops up every few months when there’s a perceived lack of progress because we’re not being featured on Joe Rogan or having a Netflix documentary made about us or having Merck fund hundreds of millions in research.

That is not how these problems are solved.

Our message to the forum as an admin team has been consistent over the past few years - that this issue is complex and will take time to resolve. You cannot jump forward without laying the groundwork. This type of thinking is akin to trying to put a roof on a house before even laying the concrete slab.

We’ve been slowing taking bites out of the elephant for the last two years in particular. Instead of wasting time on these threads, how about coming forward to work with us on the many projects we’ve put forward, all of which have been carefully considered and have a purpose?

Things like the new video podcast - how does anyone expect considerable research into a disease that has a mostly silent and anonymous patient group? What about liking and sharing the YT patient stories, and explainer video that we released on Rare Disease Day, to validate and legitimise our condition for clinicians and researchers? What about something as simple as completing the patient survey, to collect a large dataset that catalogues the symptom profile of our condition?

We have also invited any patient with the time and enthusiasm to tackle this condition to come forward and volunteer to help our group more generally. I’ve invited people in this thread personally as I think that your enthusiasm can and should be harnessed. Still, people want to create their own projects and duplicate work instead of contributing to what’s already there.

We have another exciting announcement coming this week, along with new projects to contribute to, so please before wasting time on these endeavours, consider contributing to work that is already in progress.

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#10

Well said @Sugarhouse.

I’m sorry for not expressing things as politely and carefully as you have done, but frankly, talking about the problem that the ALS society had where they spent a big part of their donations on counting the money they were receiving (if that even makes any kind of sense at all - it doesn’t to me) is the kind of nonsense that makes people think that they can sit back and wait for someone else to do everything. It makes me angry that people are going to be distracted by that.

You might as well say “microsoft made 100bn last year. Has anyone with zero experience of programming got a good idea for a piece of software?”

Because as long as people wait for that $100m or that viral something to take off, nothing happens,
except you get older. We are making progress, but it would be a lot easier if more people got onboard instead of deciding they can do it better by offering get-cured-quick schemes, comparing us to charities headed by Hollywood stars or saying “if we could just go viral, we won’t be able to count the money it’ll be coming in so fast”.

Honestly, take a dose of reality.

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#11

There really are a lot of super unrealistic ideas on this forum. I can’t blame people from having big aspirations, but these huge goals create some noise on the forum and can mess with people’s expectations and hopes on here. I’m an advocate of living your own life as best you can unless you feel you have something to contribute. A lot of people try to “get people to actually do something” because they’re frustrated and feel not enough is being done but that won’t do anything either. I’m saying not to criticize but I think these things actually decrease morale and psych health here.

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#12

Thank you. Finnaly a serious answer :slightly_smiling_face:

I like the idea to look around in the biotech space. It’s a risky area with a lot of upfront investment, but it’s definitely worth having a look here.

Yes, I agree that it needs a process and that it needs to start small and if something works it can be scaled up.

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#13

As somebody who has built a career as a professional investor, this really isn’t practical. There isn’t a clear molecule that might work for PFS (other than allopregnanolone which is a work in progress), the addressable market for a PFS drug would be extremely small as it is basically an orphan disease, and the upfront cost would be so high to just do background research that it isn’t practical.

#14

I agree that wishing 100 million from Donald Trump is a bad idea, as it is solely based on good faith and not based on any strategy.

I disagree that a charitable company could not generate a lot of money for research. This is not based on good faith but rather this can be controlled by our own action, therefore the likelihood depends on us.

I have co-owned a company in the food/supplement industry. This is a huge industry and although the margins are low, the possible returns of done right, can be good. Currently every PFS sufferer is spending at least 1000 dollars on supplements and herbs each year. With a community of 1000 people this equals 1 million dollars every year lost on supplements that could have been invested in research.
I have spoken out against spending the money on quick fixes like supplements and rather investing that money into research. But I see from communities (PSSD, PAS, Flox, akathisia, persisting benzo damage, me/cfs) that this is a common phenomenon in diseases without treatment options.
A smart nerd call Musk once said: “If you can’t beat it, join it”.
Therefore I consider going back into my industry and turning that loss of money into an vehicle for research.
But as it is a low-margin industry and as physical goods come with extreme organisatory efforts, I would like to hear more ideas.

Of course awareness efforts should continue. I am already putting my face out there and speaking out publicly.
I am probably gonna speak on the biggest German convention of psychiatrists this year. So much about clinical awareness work.

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#15

I am open to help where can.

  • I completed the survey
  • I sent my 23andme data
  • I connected PH stuff with several scientists
  • I wrote and published my patient story, spoke out on podcast and newspaper and if you want I speak for you YT channel
  • if there is more I can do let me know

Still it will not work out to solve any disease with 2 million in funding.
ALS raised hundreds of millions of dollars and has now its first trials. Parkinson’s has raised billions of dollars and is still deadly. I can’t find any disease that has been solved with less than 5 million dollars in funding.
Awareness work is important for funding as well, but it cannot substitute efforts on solving the core problem: research funding - and this cannot come from the community alone. Therefore it needs good ideas. This is not a loss of focus. Talking about supplement, symptoms and quick fixes is a loss of focus. Not being open to new ideas and and initiatives of other people can be dangerous.
I am here to help where I can. I hope the same is true vice versa.

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#16

What youre doing is appreciated

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#17

no offense but you are looking at it from a narrow angle and trying to horse shoe it into only PFS’s specific details, if you are saying that we can’t get money from investors. here is an orphan disease that raised funds, and then started treating within 3 MONTHS: https://medium.com/lydian-accelerator/saving-lydia-a-path-from-diagnosis-to-treatment-in-3-months-de9a1d8f0b95

we need to play to people’s self interests. for example, why would a biotech investor, who invests in new acne drugs, invest in us?

because if he can wipe off acutane off the market with a press of a button (research that proves acutane’s dangers), then his investments would have a better chance of capturing majority market share.

there are different self interests involved, and all are specific to the communities (biotech investors, longevity researchers, etc), and individuals.

its hard, but these are the types of angles we would have to take and it requires a bit of ingenuity

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#18

Lydia has a single gene problem that is a lot easier to treat than PFS which is a multisystemic issue that doesn’t yet have an identifiable cause.

Feel free to give it a shot, I obviously hope you succeed if you try.

#19

Thanks, @lakehouse. Although orphan diseases, this is very inspiring and there are a lot of lessons for us in this story to learn.

PFS, PAS and PSSD is a complex disease and we are extremely limited in resources. Therefore it needs a lot of out-of-the-box thinking!

1 Like
#20

the important thing im trying to point out is that focusing on the exact details is going to be a dead end

so what if its an orphan disease?

PFS is in theory related to prostate cancer’s AR negative phase and all the problems that comes from it (as linked in one of my recent posts).

so why wouldnt prostate cancer researchers and funders be interested in our data? they need to hit their research from all different angles and so do we.

intersections would be interesting to them.

anyways, we need to get some small wins, and keep it consistent

we always shoot for some huge virality stuff like trying to get blasted on some netflix documentary

or we end up overlooking hard and gritty avenues like consistently talking to to a bunch of people with money and figuring out who would be interested in even donating $5, and why they would be

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