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Why things take so long?

Discussion in '9th World Congress for Hair Research Conference' started by hellouser, Nov 24, 2015.

  1. hellouser

    hellouser Senior Member My Regimen

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    This is more of a general thread that should address my own ignorance, as well as the many frustrations with the slow progress of discoveries making it to applicable usage. So while I was at the congress, a few things need to be addressed.

    First, while it isn't theoretical physics grade complexity, it's still a long trial and error experience for many of the researchers. After speaking with one of the main researchers, they mentioned to me it took FOUR years of failure before a 'eureka' moment which resulted in TEARS from the overwhelming satisfaction of success. So yes, some things DO take a while to crack.

    Speaking with Claire Higgins, many of them also have to actually TEACH outside of the lab, which will obviously take a large chunk of their time away from giving us baldies a solution, but that's peanuts of a problem compared to the next two points.

    I asked specifically Beren Atac, 'Ok, so you guys are able to create a dermal papilla/follicle in a lab. What's stopping you from getting a human guinea pig and trying it out? Or even me! Take me, I'll sign up and you can run your experiments on me.' Regulations. STRICT regulations do not allow that, and that goes for both FDA as well as the european governing body for health. So I asked next; Alright, why not just try a mouse and see what happens? Mice are abundant, it can't be THAT difficult to get them and do some experiments?

    And this is where I got furious inside when I heard the answer: EVEN MOUSE STUDIES, are ridiculously over-regulated. To even get the green light to do a mouse study, you need to submit papers, get things looked over by other professors, approved, etc. And GUESS how long that takes. 6-9 MONTHS. Yes, that is NOT a typo, it is SIX TO NINE MONTHS just to get approval on MOUSE studies. I couldn't wrap my head around it. To which I replied: "What?! 6+ months? And why do you need approval? WHO in the world would be more qualified to review and approve your work than YOU?" After all, Beren Atac and Gerd Lindner are at the very TOP in this field, right?!

    So just imagine; You make a breakthrough discovery, you want to move it forward and make real world applications of it but instead your BOGGED DOWN by all this red tape. It's ridiculous. But it gets worse:

    Finally, another major obstacle is funding. And this is where things get VERY frustrating too. 200,000 EU gets spent quickly... for all the individuals that are part of the research teams need to get paid, lab equipment, etc. and yeah, that would include them waiting around 6+ months just to get the go ahead to do a mouse study, But that's not even it.... suppose you ARE either Beren Atac or Gerd Lindner and you request funding... you're likely to get rejected... why? Because it's HAIR LOSS and not CANCER. To the guys in charge, hair loss is a joke and just like I've been saying for years; it's a major social stigma that desperately needs to be addressed. It's very clear that we, the 100,000+ members on the forums alone DO NOT DESERVE a break until cancer is solved first. And that's incredibly arrogant to view things. I can count on ONE hand how many legit researchers are working towards solutions for hair loss (Replicel, Histogen, Follica, Tsuji, Beren Atac/Gerd Lindner). I'd probably end up writing a NOVEL if I had to list the work being done for cancer.

    So yeah, the work MAY be relatively easy in the end, but the REAL problem lies in regulations and social stigma. I'm sure Fred will have something to say to that, because he's always been right about the subject.

    I hope that clears the air a bit... sure as hell does for me, so I suppose we could all put an end to the 'timing' criticisms being targeted towards the researchers as it's misguided (yes, I've been guilty of it too... I think the vast majority of us are).

    Big thank you goes out to Dr. Claire Higgins, Dr. Beren Atac and Dr. Gerd Lindner for explaining everything.
     
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  2. c_super2

    c_super2 Established Member

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    Wow. I had no idea. But considering it takes this long to get the ball rolling I still think researchers do a fairly fast job with all of the restrictions. I remember HairLossTalk.com ten + years ago and there was literally nothing to look forward to. We know tons more about hairloss than we did back then.

    What can we do to change the bureaucratic nonsense?
     
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  3. Dragonborn

    Dragonborn New Member

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    ^^^^^^^^
    100% truth.

    In case they ever go the route of crowdfunding I will most surely donate. However I don't know if just advertising it on the forums and social media will be enough to gain enough funding.
     
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  4. hellouser

    hellouser Senior Member My Regimen

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    Dr. Lindner actually mentioned that Crowdfunding WAS actually considered, and I'm sure they still would consider if there was a solid strategy that would more or less guarantee a good turnout for donations. I've offered my help and I don't know a more qualified person to lead this project than me considering I've worked in marketing and advertising for almost the last 15 years. I know just the way to do it, but it too will require money to get everything working, ie; production of a video/commercial to go viral and get NOTICED.

    But here's the thing, they'd need likely need donations in the millions. We'd need some serious connections to get some major donations... something like a charity.

    OH!! I just remembered, I told Beren about a particular project I worked on with a team of designers and marketing experts for a hospital. We ended up raising about 5 million dollars (I think, its been a while, but it was in the millions). I then followed up "Oh, I should also mention that it was a BIG project, so a campaign like that doesn't happen overnight, we had about 15-30 people involved with it and it took about 1.5 years to roll it out from brainstorming to final launch." She laughed at the last part and I asked what's so funny. She said 1.5 years is actually a really short amount of time in their world. LOL!
     
  5. WhitePolarBear

    WhitePolarBear Senior Member My Regimen

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    I've had my life almost completely destroyed by experiencing severe hair loss by the age of 16.

    I've seen other people's lives being affected by hair loss, and the stigma is so high that even they will convince themselves it's not the hair loss.

    My cousin suffered from alopecia areata for 1 year at the age of 21, one year he spent locked up in his room, but he didn't dare to say it was because of the hair loss.

    He said it was because he liked staying at home (please). My family repeated the same BS, because there's no way hair loss can do that to a human being.

    "It can only do that to you Fred! You were so obsessed! You see, your cousin just liked to stay inside when he had bald patches all over his head!"

    Same with other men I've seen go bald young: they became less and less social, or never posted a Facebook picture of themselves again for example.

    If you ask them, even they will tell you it had nothing to do with their hair loss. While also adding that you're being paranoid of course.

    Come on man! You start diffusing and all of a sudden, you don't even dare to put one picture on Facebook. Complete coincidence!

    They just cannot possibly admit what hair loss can do that a human being, especially in the years that are supposed to be the best of their life.

    No one among your family will admit it, no one among your friends, no member of this society, so of course, the people giving the green light for funding think the same.

    Even bald men who have suffered a lot from hair loss won't admit it's been a problem for them. They won't even hesitate to take a shot at other bald men, and call them weak.

    That's how most men react to hardship unfortunately, we have been taught to suck it up, to never show any sign of weakness.

    For one bald man like hellouser or me who will publicly admit we have suffered because of our hair loss, there will be a hundred who will pretend not to care, while they do.

    The other problem that hellouser has already mentioned many times:

    Even if millions of bald men came forward and pushed for a baldness cure, an army of angry feminists and their white knights would hysterically laugh at us, call us crybabies and tell us to man up.

    If someone has ideas on how to solve this problem, he should come forward. We definitely could start a grassroots movement. But I won't lie, I would be afraid to go that way.

    Who wants to put their ass on the line and get a tattoo on their forehead that says "crybaby" for the rest of their life? So we would get back to square one: no one cares about men's issues.

    Even the male suicide epidemic doesn't make the general public raise an eyebrow. If only men could unite and work together for their common interest.

    But men are wired to care about women first, that's why we have countless awareness campaigns about the tiniest issue women may suffer from, but nearly nothing for men.
     
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  6. richieb

    richieb New Member

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    I take the congress didn't bring much good news as a result of this post then hell?
    P.S thank you so much for your hard work.
     
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  7. nameless

    nameless Banned

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    Don't get despondent yet. Helouser hasn't given all the news from the Congress yet

    And anyway, it looks like SM04554 may be a significant improvement over existing treatments
     
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  8. Illu2ion

    Illu2ion Established Member

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    Yeah this is exactly what came across my mind when thinking of gaining more public awareness. It's going to be impossible in a world like this because of what you described. You have to go the anonymous route to get a lot of men over the line but this is really hard. Maybe something like signing an online petition or whatever? These things aren't anonymous per se as you have to sign these with your name but at least not everybody instantly knows that you agree with the fact that hairloss hurts as ****. But still such a thing has to get spread. How do you do such a thing without ' exposing' yourself? And what exactly could we make that can get signed? It has to actually mean something. If we want to do such a thing, we have to think it through thoroughly.

    I do think that getting onto social media with this isn't the right thing to do. Even if you would create a FB page, people would still have to like it to show awareness, thus exposing themselves. I haven't liked the FB page of hairlosstalk for that exact reason. I'm too scared to come out for my fear of balding.
     
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  9. g.i joey

    g.i joey Senior Member

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    The one time I could agree with fred 100%. From someone who spent any free moment out in public, to someone who debates if he wants to go out. I could say hairloss is when I seen a dramatic shift in wanting to go out and do ANYTHING, even if it was sitting in a parking lot with a couple friends to getting begged yo come out at least on weekends with friends. The culprit; hairloss
     
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  10. Mach

    Mach Established Member

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    Seems most of the breakthroughs come out of universities. We should gather a list of professors. Is there a specific place they publish papers?
     
  11. WhitePolarBear

    WhitePolarBear Senior Member My Regimen

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    My master's thesis was about online petitions. The two options (a petition and a Facebook page) you suggest here, even combined, won't produce any result at all.

    The online world can be decisive and a big asset for the success of a social movement if it's already strong in the real world, but it almost never works on its own.

    All the social movements that were successful had real world actions: demonstrations, events, appearing in the traditional media etc.

    Plus a lot of online movements become successful only because of slacktivism and the bandwagon effect.

    If we launch a "baldness cure movement", we won't even benefit from these, which are essential for the success of an online movement.

    Because when people see a movement against let's say child abuse, they will be like "Yeah, that's horrible, who could argue with that, sign/like!" *opens another lolcat video*

    They won't even read the content of the page, just a quick glance at the title and they're done.

    Then because of this lazy form of activism, people who land on a petition/Facebook page will just sign/like it because they will see that tens of thousands of other people already liked it.

    This is the bandwagon effect: people are f-ing sheep. Now imagine a "male hair loss awareness" petition or Facebook page.

    The main reaction of 99% of the population would be to skip the description and just be like "What a bunch of crybabies, there are more important things in life! Like cancer and street harassment."

    So for us, no slacktivism, an insignificant number of signature, no bandwagon effect. A year after the petition is launched, we would get this result: https://twitter.com/MPBFoundation
     
  12. uncomfortable man

    uncomfortable man Senior Member

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    What does this mean for japan 2018?

    Thanks for the report, even if the news isnt good.

    Disturbing realization that the stigma itself is a major hurdle.

    Why would anyone want to help a demographic that they have been socially conditioned to hate?

    How do you make people aware of their own prejudice without offending them in the process?

    How can we garnish sympathy next to cancer? They would not ALLOW us relief as long as it exists.

    If it's a case were making then we must first compile evidence.Certainly we have enough in the media.

    Substitute any protected class with the bald person in that instance and watch the righteous pc anger

    explode. Then ask, "If it's not ok to treat these people like this... then why is it ok to treat these people

    like this?" Then show the actual footage and examples using the real bald men. It would probably piss

    off more people than not, doing more harm than good for our cause. But we are already at such a

    disadvantaged point that asking politely or trying to appeal to their emotions or sense of reason is

    useless. Its like we almost have to trick them into this. The only other thing I can think of is doing the

    exact opposite of what everyone tells you to do ie. Shave/workout/embrace. What if bald guys

    everywhere Started wearing really bad toupes and grown out combovers? And when they inevitably

    ask why they are going to such ridiculous measures, they will respond " Becuase its been made clear

    that baldness is socially unnacceptable." Sorry if im not helping, its just that a hopeless situation has

    just become even more hopeless.
     
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  13. moarhairpls

    moarhairpls Member

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    Relax everybody. It's been slow going, but we're finally making progress in understanding hairloss and treating it. Better treatments ARE coming. The only thing that can speed it up is changing the laws, which isn't going to happen with all the bleeding hearts around.
     
  14. distracted

    distracted Established Member

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    Damn. I'm still waiting for the good news that came out of the conference. If there was any.
     
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  15. DDobler

    DDobler Established Member

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    This is my life in 120 lines.
     
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  16. MickChong

    MickChong Established Member

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    There are many, many countries in the world without such ridiculous nonsense and I would hope researchers would explore doing things elsewhere than putting up with this. The problem is the major markets of the world are western - especially for male pattern baldness.
     
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  17. paleocapa89

    paleocapa89 Established Member

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    I think the only viable way to raise awareness is through women's Androgenetic Alopecia. If I understand correctly, the mechanism is the same, - although they do not develop a pattern.. - so researchers can raise money to tackle that and men would benefit from it as well. Right? Or maybe raise awareness through women but research on men :)
     
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  18. GoldenMane

    GoldenMane Senior Member My Regimen

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    lol, you're probably right!
     
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  19. bobby dearfield

    bobby dearfield New Member

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    Good Strategy!! Since nobody cares for us men... lol
     
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  20. macbeth81

    macbeth81 Established Member

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    If cancer was cured, there would be another disease that takes precedence over baldness (e.g. heart disease, diabetes, etc). Convincing society to care will not work because there are winners (full-heads and hags) and losers (us), and the winners will not care.

    There would be a better chance to convince big pharma to create a cure. A few million to fund trials is peanuts and they have the political clout to let it rain mice on their labs.

    We hear about the work from academia because they publish and hype their research in hopes of getting funding. Alternately, how many of us heard about SM04554 before they started Phase I? Aren't they backed by Pfizer? Then bimatoprost has failed twice in Phase II, yet Allergan is still going to a third attempt. Good luck getting a small bio or university to do that; they are panhandling just for a few million.

    Nothing against the smaller bio and universities but they don't have the money to move something quickly.
     
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