Looking for help to start a hair loss fund

[waynakyo]

Anyone who wants to make a difference and has initiative and time, please contact me. I am willing to volunteer half my time on this (i.e. I don't need anyone's money). This includes interviewing and flying to conferences if needed.

Other non-life threatening diseases are getting more attention because patients start foundations. I was happy to see that Alopecia Areata foundation raised 190K in one month. It affects roughly 2% of the population.

With Androgenetic alopecia the sky is the limit. I am not talking about raising money from this forum, but from the population at large. Set up a website, then advertise it here and on other forums and channels.

What would the foundation do: Fund research, encourage collaboration between researchers, organize conferences, etc. This would also give us access to researchers like we never had. This will help us solve some of the frictions in the market, including the opaqueness problem.

I know people on here want to stay anonymous. But we can always find someone who be happy to be one of the faces of the foundation.

All we need is few motivated founders, preferably of both genders, and a lawyer to set it up. Trust me, I am only doing this because no one else is doing it. If someone wants to take over this, by all means. We can set up a voting system, TBD.

Now watch me get trolled.

cheers

 

[FollicleGuardian]

Great initiative. We need people like you to cure this disease.

 

[MeDK]

So what country are you going to set that foundation?

The internet is very wide spread, so how is it even going to be possible with such a diversity?

It sounds very easy, create fundation, create a webpage and money comes in just like that.

But real life isn't like that. When handling money, someone needs to get paid, and when someone needs to get paid, there needs to be a steady money flow. And that is just to make it run.

Then there is the whole "I want to fund a research" who is the deciding factor, how much to pay, how many years, what is the ROI (if any), who owns the research?

The lawyers aren't going to do this kind of work for free. And they aren't famous to be cheap anywhere.

And my red flag on top of all this is "I don't need money, but i gladly help setup something to get peoples money, without putting any money in it myself"

 

[Poppyburner]

'The Michael J. Fox Foundation for Parkinson's Research is dedicated to finding a cure for Parkinson's disease (PD) through funded research and ensuring the development of improved therapies for those living with Parkinson's today. Established by Michael J. Fox in 2000,[2] the Foundation has since become the largest non-profit funder of Parkinson's disease research in the world, investing more than $650 million in research to date.[5] In 2010, the Foundation launched the first large-scale clinical study on evolution biomarkers of the disease at a cost of $45 million over five years.[6]'

The Michael J. Fox Foundation - Wikipedia

en.wikipedia.org

 

[benjt2]

Not the first time this idea is being discussed on these forums; the last one never took off.

I think, if done well, it would be an amazing idea. And to be done well, it needs people with experience in this or something similar (e.g., business investing).

Just a hint, because I have some insight into business investment through my workplace:
Don't just set up a fund that does unconditional funding. You would want three different pots or milestones with specific conditions.

Pot 1: Research
From this pot, only limited amounts of money should be provided as initial funding or for proofs of concept. Max 33% of all the foundation's funds, and limited handing out of funds to single players (e.g., max 250k). Eligibility needs to be evaluated by a board who would decide who gets money from this pot and who doesn't. Could be the biggest donors of the fund, scientific advisors, or both.

Pot 2: Strategic investment
Take on specific research groups and make any investments conditional on milestone achievement (e.g., successful complection of phase 2 or 3 or market launch). This is an agreement between the fund and research groups or companies.

Pot 3: Bounties
Define criteria for what would constitute different degrees of cure (indefinite arrestment of progression, regrowth from NW7 to NW2, which time frames) and declare a sum for each of these different treatments, to be awarded to the company that brings one of these potential cures to market. This pot does not require an agreement beforehand between fund and companies; however, it might be useful to make payouts contingent on certain criteria (e.g. priority access to treatment for fund members who gave a certain amount of money).

The important thing about pots 2 and 3 is that there are specific criteria to be met, to ensure that research groups or companies don't burn through cash without a need to deliver (like they often do in uni/public research). For the same reason, for pot 1, it is important to have a very good selection process.


To create incentives for people to provide money to this fund, it is possible to set up "reward packages" like with crowdfunding campaigns.

For example, for providing 50k USD/EUR in funds, one would get priority access to whichever treatment was funded from pot 2. Priority access means access within 6 months after market launch in country of residence.


If a fund like this was done well and there were good incentives/rewards (access to prototypes, priority access to finalized treatment) I'd be willing to drop a good amount of money on it. I'm sure some wealthy individuals would, too.

 

[MeDK]

Not the first time this idea is being discussed on these forums; the last one never took off.

I think, if done well, it would be an amazing idea. And to be done well, it needs people with experience in this or something similar (e.g., business investing).

Just a hint, because I have some insight into business investment through my workplace:
Don't just set up a fund that does unconditional funding. You would want three different pots or milestones with specific conditions.

Pot 1: Research
From this pot, only limited amounts of money should be provided as initial funding or for proofs of concept. Max 33% of all the foundation's funds, and limited handing out of funds to single players (e.g., max 250k). Eligibility needs to be evaluated by a board who would decide who gets money from this pot and who doesn't. Could be the biggest donors of the fund, scientific advisors, or both.

Pot 2: Strategic investment
Take on specific research groups and make any investments conditional on milestone achievement (e.g., successful complection of phase 2 or 3 or market launch). This is an agreement between the fund and research groups or companies.

Pot 3: Bounties
Define criteria for what would constitute different degrees of cure (indefinite arrestment of progression, regrowth from NW7 to NW2, which time frames) and declare a sum for each of these different treatments, to be awarded to the company that brings one of these potential cures to market. This pot does not require an agreement beforehand between fund and companies; however, it might be useful to make payouts contingent on certain criteria (e.g. priority access to treatment for fund members who gave a certain amount of money).

The important thing about pots 2 and 3 is that there are specific criteria to be met, to ensure that research groups or companies don't burn through cash without a need to deliver (like they often do in uni/public research). For the same reason, for pot 1, it is important to have a very good selection process.


To create incentives for people to provide money to this fund, it is possible to set up "reward packages" like with crowdfunding campaigns.

For example, for providing 50k USD/EUR in funds, one would get priority access to whichever treatment was funded from pot 2. Priority access means access within 6 months after market launch in country of residence.


If a fund like this was done well and there were good incentives/rewards (access to prototypes, priority access to finalized treatment) I'd be willing to drop a good amount of money on it. I'm sure some wealthy individuals would, too.

Well it always sounds easy on paper.

But since you work with this, you know money that ain't money are money losing value.

Try and tell they need to invest something like $10.000 with no ROI (or almost none, could be the golden egg was found), and still pay other people to use their money.

That is a hard idea to sell to people that doesn't understand how money works. If it was so easy, many companies wouldn't have problems finding investors.

But reality is, that people want something when they give someone $10.000. either they want the money back, or some strange ROI. And then when you tell then that life science from idea to commercialization takes decades, then they will look at you if you are crazy. And that is IF someone come up with something that can be commercialized, and that is still a thing that takes at least a decade, just look at the different treatments people follow now.

So how are a new fundation going to argue for collecting 1$ million dollar with no promises, and still convince them to put in money for the running costs?

 

[waynakyo]

Thanks @benjt2, @Poppyburner, and @FollicleGuardian. Glad to see thoughtful and encouraging comments. I am located in the US.

@MeDK you are free to make your opinions but don't put words in my mouth, I never said I will not put money myself in it.

To ward off skepticism and suspiciousness I reached out to a lawyer with one question first and foremost: whether one can make it legally binding on the foundation to return funds to contributors in case it fails. His answer was that this is feasible. If you want proof of such discussion contact me.

Now to @benjt2, @Poppyburner, and @FollicleGuardian and every motivated person here: We are bound to face skepticism.
How about we start small with a first and well defined milestone. Once we reach that milestone people will have more confidence at the next rounds.

What would be your suggestion for milestones? (after setting up a website and Establishing/incorporating the foundation)?

I can think of an online conference where we invite some of the people we are most interested in interviewing in the hair loss research world. Like this we establish our presence with them, and we get visibility in what they are doing. (think Zarev, Stemson, Follica, Tsuji....). People can vote on who would they want to hear from.

I think once this is achieved, people would have confidence that there is an effective foundation that delivers. The next round will be a much larger campaign with objectives along the lines of what @benjt2 and I discussed.

 

[waynakyo]

@MeDK: I think you made it loud and clear that you don't like the idea and you don't trust it. So you don't have to donate or do anything. Therefore please let's keep it at that.

 

[MeDK]

@MeDK you are free to make your opinions but don't put words in my mouth, I never said I will not put money myself in it.

To ward off skepticism and suspiciousness I reached out to a lawyer with one question first and foremost: whether one can make it legally binding on the foundation to return funds to contributors in case it fails. His answer was that this is feasible. If you want proof of such discussion contact me.

how is that even possible if there are no more money?

You can't give anything back you don't have, so I don't believe you have spoken to any lawyer about that.

 

[waynakyo]

OK I am going to ignore that guy, who clearly doesn't understand what he reads. I just noticed the others already did that.

 

[werefckd]

Execution will be very hard, but it's a nice idea at least.

I have the impression that it will be very hard if you try to relay on retail money to make it work. Dr. Terskikh in the beginning tried the crowdfunding route to establish his company and it didn't work (don't know how hard he tried though), eventually he made got the money he needed via traditional early stage investors.

Anything less than $1M bucks wouldn't move the needle. Raising $1K from 1K people would be impossible IMO. I'm trying to raise 50 bucks from 10 people to get access for some hair transplant docs presentations and it is taking ages, lol. But we are almost there.

What I would do If I was starting a "cure baldness fund" is:

• Approach some bald very rich people. People with a emotional connection to the cause and more than enough money to don't care for the amount invested.

• Have a compelling use of funds case right of the bat (a "give me money now and we will figure out where to put it later" approach is not very appealing)

• Such compelling use of fund would be to invest at least half of the funds in Stemson, as they are currently the only researchers trying to beat baldness FOR REAL. But in other to move the needle for them the investment should be at least a half a dozen million, as they are relatively well funded already.

• With the other half of the money I would try to find other early stage that has the impact to be a game changer (forget those treatments already in clinical trials promising 10% regrowth as this is sh*t). The possibility of allogenic hair transplants comes to mind ,

 

[waynakyo]

Yes, people have a hard time donating to (for-profit) companies. For good reasons. And investors are nervous about hair loss for good reason. But I believe a non-profit will fill the gap and give us a say in the way things are going.

I think broadly we are all thinking along similar lines. I am glad to see some of the responders are dreaming big too. I think the question of whom do we give the money to is going to be decided based on evidence and votes. I am not going to get into the details of which companies are more or less likely, because the thread will morph into that.

Here is what I suggest: we focus on a reasonable first milestones. We cannot raise a lot of money without a structure in place, and we cannot raise money just to put a structure in place either! It is a chicken and egg problem. But can be resolved.

---
So here is my suggested first milestones.


Milestone 0: I need few people on board, a focus group. So we can bounce ideas back and forth, coordinate on Milestone 1.
Cost 0 dollars, just initiative. We can do so either on here (troll problem) or via a mailing list and update people on here. I prefer the latter. You can remain anonymous.

Milestone 1
1- build a website
2- Set up the foundation (legally in the US). Choose advisers, and structure the advisory board, the voting system and so on. You will be voting for these folks.

This will involve some money. It is good to have a doctor on the advisory board. The money should be sent to someone YOU trust, and I don't want to be that person. For example we can identify someone who youtubes about hairloss. Or some veteran on this forum. Or hire an outside treasurer.

Milestone 2

Now that we have a website and organization we raise money to set up a series of video interviews with top researchers/doctors/companies. We can have 2 people to represent us and talk with them. Maybe a series of 10 interviews. We put them there on the website. People in the hair loss community learns about us.

We might have to pay for some of these appearances, thus the need for money. For some (companies) we won't have to pay.

Milestone 3
Now that our website is visible thanks to these interviews, this is where we start a drive to establish a large hair loss research fund. To fund research, to give awards, and foster collaboration. We can discuss this at length here. But we all are on the same page: we need effective research, need it quick, and need to have a selective process.

---

All opinions are welcome (but not trolls). I think at the end of the day, the voice of those who are willing to volunteer some time on this (even if 2 hours a week) should count more, because they will be the ones getting the stuff done.

So who is up to be part of that focus group? There are some very smart people on here, so feel free to suggest names...

 

[TurboFixer]

awesome initiative @waynakyo

 

[TurboFixer]

It would be cool if we could fund our own research chemical company, and sell pure chemicals non profit. With tested batches.

that would be so amazing

it actually totally seems do-able. Just needs mobilization

 

[Balding curse]

It would be cool if we could fund our own research chemical company, and sell pure chemicals non profit. With tested batches.

That's a genuis idea, everything would be available with an afforable price and tested.

 

[Armando Jose]

Anyone who wants to make a difference and has initiative and time, please contact me. I am willing to volunteer half my time on this (i.e. I don't need anyone's money). This includes interviewing and flying to conferences if needed.

Other non-life threatening diseases are getting more attention because patients start foundations. I was happy to see that Alopecia Areata foundation raised 190K in one month. It affects roughly 2% of the population.

With Androgenetic alopecia the sky is the limit. I am not talking about raising money from this forum, but from the population at large. Set up a website, then advertise it here and on other forums and channels.

What would the foundation do: Fund research, encourage collaboration between researchers, organize conferences, etc. This would also give us access to researchers like we never had. This will help us solve some of the frictions in the market, including the opaqueness problem.

I know people on here want to stay anonymous. But we can always find someone who be happy to be one of the faces of the foundation.

All we need is few motivated founders, preferably of both genders, and a lawyer to set it up. Trust me, I am only doing this because no one else is doing it. If someone wants to take over this, by all means. We can set up a voting system, TBD.

Now watch me get trolled.

cheers

Looking for help to start a hair loss fund​

+1, Great idea

 

[werefckd]

Yes, people have a hard time donating to (for-profit) companies. For good reasons. And investors are nervous about hair loss for good reason. But I believe a non-profit will fill the gap and give us a say in the way things are going.

I think broadly we are all thinking along similar lines. I am glad to see some of the responders are dreaming big too. I think the question of whom do we give the money to is going to be decided based on evidence and votes. I am not going to get into the details of which companies are more or less likely, because the thread will morph into that.

Here is what I suggest: we focus on a reasonable first milestones. We cannot raise a lot of money without a structure in place, and we cannot raise money just to put a structure in place either! It is a chicken and egg problem. But can be resolved.

---
So here is my suggested first milestones.


Milestone 0: I need few people on board, a focus group. So we can bounce ideas back and forth, coordinate on Milestone 1.
Cost 0 dollars, just initiative. We can do so either on here (troll problem) or via a mailing list and update people on here. I prefer the latter. You can remain anonymous.

Milestone 1
1- build a website
2- Set up the foundation (legally in the US). Choose advisers, and structure the advisory board, the voting system and so on. You will be voting for these folks.

This will involve some money. It is good to have a doctor on the advisory board. The money should be sent to someone YOU trust, and I don't want to be that person. For example we can identify someone who youtubes about hairloss. Or some veteran on this forum. Or hire an outside treasurer.

Milestone 2

Now that we have a website and organization we raise money to set up a series of video interviews with top researchers/doctors/companies. We can have 2 people to represent us and talk with them. Maybe a series of 10 interviews. We put them there on the website. People in the hair loss community learns about us.

We might have to pay for some of these appearances, thus the need for money. For some (companies) we won't have to pay.

Milestone 3
Now that our website is visible thanks to these interviews, this is where we start a drive to establish a large hair loss research fund. To fund research, to give awards, and foster collaboration. We can discuss this at length here. But we all are on the same page: we need effective research, need it quick, and need to have a selective process.

---

All opinions are welcome (but not trolls). I think at the end of the day, the voice of those who are willing to volunteer some time on this (even if 2 hours a week) should count more, because they will be the ones getting the stuff done.

So who is up to be part of that focus group? There are some very smart people on here, so feel free to suggest names...

Cool let's brainstorm.

Regarding milestone 2 - what if instead of building something from scratch, we don't leverage something that already exists. For example, HLC2020 already interviewed A TON of researchers. That guy knows well every type of treatment under the sun, has the contacts of the researchers, and has the credibility (he has been around a long time).

Maybe he would participate in some way, I don't know. Maybe an adviser or we could do some colab. But if you have to build your own website and try to build your own credibility first it will take ages IMO with no guarantees of it ever working. I'm trying to think how to speed track end derisk that part.

Also, have you thought about helping raising funds directly to the projects to be funded, instead of raising a fund first? Maybe that way it would be easier in the beginning.

Question for thought: if someone wired $10M to the fund now, what would you do with it?

 

[waynakyo]

Looking for help to start a hair loss fund​

+1, Great idea

Gald to have you onboard @Armando Jose, one of the best hair loss scholars here.


@werefckd:
Excellent idea. I am glad you mentioned the HLC2020. I did mention that it would be good to have someone who already vlogs about hair loss. This guy blogs pretty good. I know nothing about him, but if unless someone raises issues, I am fully on board with him being on the board. He does not have a foundation I believe, but he might help us toward building one.

Regarding raising funds. I mentioned in milestone 2 it being project specific, and in milestone 3, doing what all cure foundations raising money to continuously fund activities, as per @benjt2 ideas and mine.

But I am fine with us focusing on milestone 2 type activities for now. Tie funds to specific activities. We do not want a 1M now. We need to setup the thing, agree on the activities, and then go from there. So we are on the same page.


Should I count you in?

So far it is @Armando Jose, @FollicleGuardian, and how about you @benjt2?


@FollicleGuardian

It would be cool if we could fund our own research chemical company, and sell pure chemicals non profit. With tested batches.

I get the appeal of this, and it seems that some people liked it. But it is a huge liability, producing and selling chemicals. Essentially we would be a foundation subsidizing chemicals. This cannot be incorporated in the US.
I prefer for our activities to fall under" working towards accelerating a cure.

 

[werefckd]

I see your point. We do not need to sell any chemicals. However, we could have non profit analysing. By funding a LC/MS machine. This is not illegal. We need research chemicals because things are moving so slow, so the organization would do this to protect us by doing this. Whether we like it or not, these chemicals are a big part of the industry, and 1% are getting them tested.

What kind of chemical that is being overlooked right now that you think has the most potential and why?

 

[werefckd]

Gald to have you onboard @Armando Jose, one of the best hair loss scholars here.


@werefckd:
Excellent idea. I am glad you mentioned the HLC2020. I did mention that it would be good to have someone who already vlogs about hair loss. This guy blogs pretty good. I know nothing about him, but if unless someone raises issues, I am fully on board with him being on the board. He does not have a foundation I believe, but he might help us toward building one.

Regarding raising funds. I mentioned in milestone 2 it being project specific, and in milestone 3, doing what all cure foundations raising money to continuously fund activities, as per @benjt2 ideas and mine.

But I am fine with us focusing on milestone 2 type activities for now. Tie funds to specific activities. We do not want a 1M now. We need to setup the thing, agree on the activities, and then go from there. So we are on the same page.


Should I count you in?

So far it is @Armando Jose, @FollicleGuardian, and how about you @benjt2?


@FollicleGuardian


I get the appeal of this, and it seems that some people liked it. But it is a huge liability, producing and selling chemicals. Essentially we would be a foundation subsidizing chemicals. This cannot be incorporated in the US.
I prefer for our activities to fall under" working towards accelerating a cure.

Yea I can help in some way, don't know to what extent though.