What can we do to invite the Hair Research Community to make this their Home?

hairman2 · May 9, 2013, 7:55am

Thanks for the honest post AGM… I think you are most likely absolutely spot on, on most points. People here do not like to hear such pessimistic views but I’m afraid it most likely more accurately reflects reality than the usual wishful thinking of most forum members.

I do however agree with HairlossCurse that there is some indication that the removal of an inhibitor might be have the potential to reverse balding even in advanced stages, much like it is possible to reverse the balding in alopecia areta patients even many years later.

Histogen’s also showed that their results were fairly age independent and that similar response was seen throughout all age groups. This contradicts the theory of it being part of some kind of natural aging process.

Also I think donor doubling techniques as being developed by Dr Nigam, Dr Gho and Mr Mousseigne sound very promising, at least for people willing to pay a fair amount of money.

FollicleSherlock · May 9, 2013, 1:00pm

.

FollicleSherlock · May 9, 2013, 9:13pm

[quote][postedby]Originally Posted by AGM[/postedby]
As one of the organizers of WCHR2013 may I contribute

Despite the popular concept, there is not a lot of money in hair research… Research is expensive and the money has to come from somewhere. Medical grant-giving bodies are very unlikely to fund research into male AGA so it comes either from piggy-backing on other projects or from commercial sources.

Industry is only likely to provide funding if it sees a return on investment – this does happen but it’s not a very reliable source and, like everyone else, scientists have to make a living.[left][/left][/quote][left][/left][/quote]

People on hairsite/hair losshelp/theBaldtruth/Hairlosstalk/2 private Hair sites Stopaga and Pioneer Hair Growth have connections and raise money for group purchases in the 10’s of thousands, I can’t see why they can’t get together to fund a lab?
These are sites made of mostly men, that have many connections as well as resources.
Also there are a few Dr.'s on these sites and they have clinics to do trials in parts of the world with little red tape.

[quote][postedby]Originally Posted by AGM[/postedby]
scientists of the highest calibre trying to make progress. But it is a small community. [left][/left][/quote] [left][/left][/quote]

Who specifically is this community of scientists specifically and where can one come to hear them speak upcoming?

[quote][postedby]Originally Posted by AGM[/postedby]
8. A highlight of WCHR2013 was the contribution from people with alopecia areata. They recognize it is not easy. Like them you need to be actively involved, not just complaining about our perceived shortcomings.
[left][/left][/quote]

Basically we are getting “Beat” at these conferences, by a smaller hair loss community whose voices are being heard, because we as a community didn’t organize and “showup” in a cohesive fashion at this & your other conferences and make our presence felt and put forward our agenda to see that Aga gets attention from the scientists, and network with funders and scientists to move treatment forward.

(Presently our community consists of Hairsite/TheBaldTruth/Hairloss help/Hairlosstalk/2 private hair forums stopaga & pioneer hair growth)
I’d suggest you market your conferences there as well as they don’t even know there is an N.american or European or any organization for them and hair loss or of any meetings.

we need to raise $ and mainly to connect the researchers with the $ (via crowdfunding, trials in unregulated countries, networking with pharma suppliers of ours etc) and the first step is participating in the upcoming meetings and agenda, so what is on the agenda in various parts of the year for the remainder of 2013 until the next conf. in Korea?

Ones we can participate in and support as well as what else can the community do to get involved in supporting and CONTRIBUTING to mainly be in direct contact with the research community to see about raising $ funding for it?

needhairasap · May 9, 2013, 10:25pm

researchers really dont care about conversing with trolls like JarJar etc.

Im pretty sure they’re aware of the internet, and probably are happy using journals, email, blogs, etc to communicate and discuss research.

If you did want to get the community here, you could start by blocking pretty much every existing member.

LOL @JARJAR

Bro, could you please substantiate, even slightly, one of your claims that:

Funding isn’t an issue (name a few of these pharam companies that dropped out, you really need to name more than a few, but itd be funny to watch you try to name even a few)
that a cure is all ready on earth

roger_that · May 10, 2013, 1:28am

This is maybe the single most naive, pretentious, and vague “idea” (if you could call it that) I’ve ever seen posted on HairSite. If I weren’t laughing so much about your “idea”, I’d literally be crying.

Researchers will share what they want to share, and nothing more. If they want to share their information and plans here on HairSite, they will do so, as Dr. Nigam has done recently. If they don’t want to do so, they will not do so, and there is nothing that we can do to coax or cajole them into doing so if they’re not interested. Many are very concerned (and rightfully, from their points of view) with protecting their intellectual property, and no amount of happy-talk encouragement or high-flown rhetoric by any of us here will make them do what they don’t want to do.

I can tell you’re a real “newbie” here…

This site is great for what it does… it’s a forum for those who want to speak out and share information – both hair loss sufferers and researchers. It cannot be made into some bigger community where all the world’s MPB researchers come together and share all their proprietary information, while singing “Kum-ba-ya”. Not gonna happen. They will share exactly what they want to share, and nothing more.

Please spare us the pie-in-the-sky, grandiose ideas. It’s a waste of our time.

I award you no points, and may God have mercy on your soul.

NEXT!!!

HairlossCurse · May 10, 2013, 3:42am

They already have their own specially designed databases and data sharing computer programs similar to what you see a GP using at a health centre.

FollicleSherlock · May 10, 2013, 3:45am

[quote][postedby]Originally Posted by roger_that[/postedby]
This is maybe the single most naive, pretentious, and vague “idea” (if you could call it that) I’ve ever seen posted on HairSite. If I weren’t laughing so much about your “idea”, I’d literally be crying.

Not gonna happen. They will share exactly what they want to share, and nothing more.

Please spare us the pie-in-the-sky, grandiose ideas. It’s a waste of our time.

That is exactly what they surely said to Henry Ford & Thomas Edison, isn’t it?..so I am in good company it seems.
Thinking Big is one of the keys to success in any endeavor, certainly you aren’t suggesting one be small minded in their approach to this?

I award you no points, and may God have mercy on your soul.

I don’t need points, the objective is hair and any post or feeling or extra words not spent in that endeavor is a waste and disservice to the community.

Researchers will share what they want to share, and nothing more. If they want to share their information and plans here on HairSite, they will do so, as Dr. Nigam has done recently.[/quote]

To Late the Genie is Already out of the Bottle on this Idea!

I understand that “Thinking Big” in life is often difficult & hard to conceive as it certainly isn’t commonplace, Disney himself confronted this, as did Henry Ford and Thomas Edison I am sure…

However never underestimate the power of an “Idea” Walt Disney, Henry Ford, & Thomas Edison didn’t and dare I say Dr. Nigam with his practice approach hasn’t.

You live in a country that was touched by slavery, are you aware that ending it was once just an “Idea” that started formally to be put in writing by just 12 unimportant & not powerful men who met & 9 of them were Quakers and put it in writing and signed a declaration to end it & from the seemingly unimportant meeting and declaration that came out of it, it gathered snow like a snowball rolling… over time…to even overcome the most powerful “Financial Interests” like you allude to, of the time, to end slavery. http://abolition.e2bn.org/campaign_6.html

Compared to these men that were not even powerful men and didn’t even have the power we have to communicate to the world here the way I am, this idea is like a snowball rolling down Mount Everest on the world wide web, it’s Unstoppable.

The Organizer of the Conference of Leading Researchers has already joined as a member here and has even made a very informative & insightful first post on this thread just out of my creating this thread,. and one that points out a course correction for this Snowball gaining momentum…

So Game Over it already is happening, that SnowBall is already gathering snow as it winds it’s way down the slopes and already violates the Null Hypothesis being put forward that the 2 communities are unrelated & never the twain shall meet.

This is an “Idea” that MUST happen will happen for both communities to come together otherwise everyones hair will continue to be lost and the Academic community will continue to languish without support as pointed out by the Organizer … We will start to support each other at Conf.'s as organizer points out Alopecia Areata does & Online here.

Look I understand your incredulity & having never seen snow like this, because you live in a place where it almost never snows

FollicleSherlock · May 10, 2013, 6:28am

[quote][postedby]Originally Posted by HairlossCurse[/postedby]
They already have their own specially designed databases and data sharing computer programs similar to what you see a GP using at a health centre.[/quote]

this is interesting, I’ve never heard of anything like what you are describing…
if you have any links to pics or where you heard that, it may be informative.
Thanks for sharing this…

HairlossCurse · May 10, 2013, 8:06am

[quote][postedby]Originally Posted by HairlossCurse[/postedby]
They already have their own specially designed databases and data sharing computer programs similar to what you see a GP using at a health centre.

[postedby]Originally Posted by FollicleSherlock[/postedby]

this is interesting, I’ve never heard of anything like what you are describing…
if you have any links to pics or where you heard that, it may be informative.
Thanks for sharing this…[/quote]

The databases exist on the internet for everyone to see but some you need special access. pubmed is a very public one but there is also another one which holds data about human genes and so on. Scientists will get free access id imagine and some universities let you view them for free as well. The programs they use allow to them to upload it to these databases and edit them etc.

roger_that · May 10, 2013, 12:21pm

[quote][postedby]Originally Posted by HairlossCurse[/postedby]
They already have their own specially designed databases and data sharing computer programs similar to what you see a GP using at a health centre.

[postedby]Originally Posted by FollicleSherlock[/postedby]

this is interesting, I’ve never heard of anything like what you are describing…
if you have any links to pics or where you heard that, it may be informative.
Thanks for sharing this…

[postedby]Originally Posted by HairlossCurse[/postedby]

The databases exist on the internet for everyone to see but some you need special access. pubmed is a very public one but there is also another one which holds data about human genes and so on. Scientists will get free access id imagine and some universities let you view them for free as well. The programs they use allow to them to upload it to these databases and edit them etc.[/quote]

Thanks for helping to fill him in, HairlossCurse.

Although FollicleSherlock’s enthusiasm is wonderful, I think he is just highly uninformed. Of course, he will probably never comprehend that.

HairlossCurse is absolutely right. Researchers use databases like PubMed, Index Medicus, etc. EVERY SINGLE DAY, and the academic scientific community is almost fanatical at communicating with one another using electronic means of communication, whether it’s through email, databases, websites, specialized forums, etc. It’s just that the general public – “lay people” – don’t see all this communication, so maybe some of us (like FollicleSherlock) just assume it doesn’t exist. Furthermore they only share with colleagues information that they think will help their research, but do not share anything that would compromise potentially valuable, patentable intellectual property they have developed.

FollicleSherlock – your assumption that researchers have no means of communication and that they exist in self-imposed “silos” is wildly inaccurate. The reason I am being unusually blunt with you here is that it’s rare to see someone putting out such grandiose ideas while simultaneously having no concept of what actually exists.

To assume that hair researchers will suddenly start using a commercial public forum intended for lay people to communicate with each other is just utterly naive and off-base.

Of course many of us may WISH that to happen bescause we want to see all these exciting discussions and developments happen in real time, but wishing and actually having it happen are two different things, and the real world plays out according to practicality, convention, and scientists doing things like protecting their legal interests and intellectual property by not disclosing it willy-nilly on public forums.

The post by the conference organizer was great, but not unique for HairSite. We sometimes do get quite distinguished guests here, like Dr. Nigam, even Dr. Gho, Dr. Cole, Dr. Christiano and numerous others. But that is the exception rather than the rule. Your wanting to turn this site into some kind of open forum among the entire hair loss research community is wishful thinking.

I think you’re quite a new member of this forum, and I guess we must chalk this exuberance up to the evangelistic fervor of the “recent convert”.

What you’re advocating is just not how research scientists work. They are researchers and have absolutely no incentive to hang out all their research on a public forum like laundry on a clothes line.

FollicleSherlock · May 10, 2013, 12:55pm

[quote][postedby]Originally Posted by HairlossCurse[/postedby]
They already have their own specially designed databases and data sharing computer programs similar to what you see a GP using at a health centre.

[postedby]Originally Posted by FollicleSherlock[/postedby]

this is interesting, I’ve never heard of anything like what you are describing…
if you have any links to pics or where you heard that, it may be informative.
Thanks for sharing this…

[postedby]Originally Posted by HairlossCurse[/postedby]

The databases exist on the internet for everyone to see but some you need special access. pubmed is a very public one but there is also another one which holds data about human genes and so on. Scientists will get free access id imagine and some universities let you view them for free as well. The programs they use allow to them to upload it to these databases and edit them etc.[/quote]

Of course, I didn’t know you were referring to Pubmed & Googlescholar or any of the numerous other by subscription Journals online and other available at the University because they subscribe to most of them, databases. As an aside a step in the right direction is listing all of these so we buy or piggyback access.

Yes, that is about the extent of the communication I am aware of, certainly some use email, skype etc… things we all have access to here or can purchase access to.

When I saw the generic term “databases” I was a little thrown off.

Particularly when you mentioned GP at a health center, as most of them don’t bother with research generally until it’s well packaged into something like a Physicians desk ref or online better version similar to it.

That is just it they have no dynamic forum, that frankly for many is so addictive, so I am not worried about them sharing or us seeing. As frankly I would offer, beyond assuming that there are some consumer sites about FDA drugs, that many don’t even know about Research discussions occurring or that this place exists.
That is exactly what I am saying & I am in agreement, they have no public forum online such as this, to announce to get visibility to raise the funding.

roger_that · May 10, 2013, 1:21pm

There are actually hundreds of closed websites and private online forums exclusive to the scientific research and medical community… FAR too many to mention here. Here’s just the tiniest tip of the iceberg.

http://www.clinpage.com/

http://www.clinicaltrials.co.in/

FollicleSherlock · May 10, 2013, 3:28pm

Hey Roger I’ll address your points line by line shortly since you indulged me out of interest & I’ll show similar consideration. Right now there is a 48 hr deadline with results that are a MUST to be accomplished by us all.

For now I need to put us all on notice & world community listening in below.

There exists a 48 hour window of opportunity for all of us, including but not limited to viewers here, presenters, organizers and attendee’s at the World Hair Congress to figure out how this/these forums of end users

(Hairsite, TheBaldTruth,Hairloss help, Hairlosstalk, 2 private hair forums that raised about 100k last yr to fund things -Stopaga and PioneerHairGrowth)

can assist to meet the challenge laid down by the Congress Organizer AGM by means of these World Channels to people with resources and solve this issue.

I leave it to your creativity and passion to provide a conduit in these forums, that can provide an answer to the below questions of $ facing specifically the hair researcher out there struggling to pay a mortgage or a lab needing funding, instead of piggybacking research…then mark my words, they will come!

Quote of Hair Congress Organizer to read & ask yourself how we can address this, as the above current channels Roger pointed out existing, obviously aren’t working as pointed out below…What can we all do?

1. "Despite the popular concept, there is not a lot of money in hair research and Research is expensive and the money has to come from somewhere. Medical grant-giving bodies are very unlikely to fund research into male AGA so it comes either from piggy-backing on other projects or from commercial sources. Industry is only likely to provide funding if it sees a return on investment – this does happen but it’s not a very reliable source and, like everyone else, scientists have to make a living."

2. A highlight of WCHR2013 was the contribution from people with alopecia areata. They recognize it is not easy. Like them you need to be actively involved, not just complaining about our perceived shortcomings. "

They Will Come if There is MONEY $ potential to reach an audience for FUNDING for RESEARCH HERE or via this channel to pay their mortgage or lab expenses etc.

Should be easy if all these forums can arrange cohesive group buys for treatments that amount to in the $100,000’s in total etc…and arrange testing in labs etc…we are organized…we just need to treat this disease more seriously, like Alopecia Areata treat theirs as life or death and show up!

There is always a way, this community needs hair and they need money, somre sort of exchange can take place here!

Again The Hair Congress associated Derma Conf. with the same attendees & researchers Dr. Nigam is in touch with ends tomorrow, we all have this 48 hour window of opportunity Deadline placed on us using our Passion and Creativity I trust all reading this Can find a way, as there is always a way!

FollicleSherlock · May 10, 2013, 4:24pm

more that just research, if they can organize trials and other needed elements in countries that don’t have the red tape here (such as Dr. Nigam has offered with India he said or the cheap(er) experimental chemical suppliers in China that rooms have tested…etc to allow for trials to go forward faster and cheaper)… well this forum has a far larger potential for an audience then those “closed” likely “dead” forum I checked at the link you posted… that was to a similar intellectually rich, and financially poor audience.

As I said above, to those reading, there is Money$ in this community that is organized large sum payments called “group buys” in the $100,000- $1 Million range, we can find a way for you, just like the labs that get a % of this to run NMR & Mass Spec’s, to work with us.
Again I know with the Hair/Derma Conf. ending tomorrow (Sat) that we have a 24 hour window here to figure this all out with all of you in one place off work, my advice is to join the forum at least and start posting at minimum so we can keep this conversation going for you after the Congress ends and to tweet out this thread link to all at the Congress now here https://twitter.com/iid2013 & facebook here Redirecting...!!
HairCongress tweet link here at https://twitter.com/hair2013

roger_that · May 10, 2013, 5:40pm

You keep talking about some 48 or 24 hour window – to do WHAT, exactly? Please quit beating around the bush and get to the point, already. What precisely is your plan, and if it’s so important, why haven’t you started it already!!!

lalyric · May 10, 2013, 5:41pm

i agree with jarjar that was a lousy post to be honest

FollicleSherlock · May 10, 2013, 5:57pm

[quote][postedby]Originally Posted by roger_that[/postedby]
You keep talking about some 48 or 24 hour window – to do WHAT, exactly? Please quit beating around the bush and get to the point, already. What precisely is your plan, and if it’s so important, why haven’t you started it already!!![/quote]

The 24 hour window is when the Conference of 3 sister societies officially ends tomorrow, and all the hair researchers along with Dermatologists go back home to their lives & there is no “Critical Mass” in one place with Dr. Nigam & Organizer above etc…& twitter/facebook above to communicate. Tomorrow Sat, is actually the biggest day of the entire series of Conf.
To address this and our need to make progress with the researchers and first step is having them join here so we can be in communication to open a dialogue on how we can all address it.

“Despite the popular concept, there is not a lot of money in hair research and Research is expensive and the money has to come from somewhere. Medical grant-giving bodies are very unlikely to fund research into male AGA so it comes either from piggy-backing on other projects or from commercial sources. Industry is only likely to provide funding if it sees a return on investment – this does happen but it’s not a very reliable source and, like everyone else, scientists have to make a living.”

A highlight of WCHR2013 was the contribution from people with alopecia areata. They recognize it is not easy. Like them you need to be actively involved, not just complaining about our perceived shortcomings"
As far as plan, that is for all of us to devise, first step result is getting these members to register here and post/or at least read

I have provided Twitter/Facebook that link to thread and other posts and direct tweets.posts can be communicated to hair congress and sister Derma which Cots and Garza and others have certainly stayed over for…

I leave the rest to the community, as I have to run now, will update as I can,

The First Step is to log into the Twitter and Facebook pages for the conf, link them here and talk to them…along with reposting this to all other hair sites…about how we can address the above using a world channel such as this & community.

drnigam · May 10, 2013, 5:59pm

Dear Roger,ko,hairloss curse,
You all have been very encouraging and we had interacted with each other many a times…

Here i will have to agree with enthusiasm of FollicleSherlock…
I have seen atleast little bit of both sides…the scientific community and forum discussions.
HT SURGEONS(business owners) make much more money than these GREAT RESEARCHERS who are mostly employees of universities or commercial companies.
They do not have much incentive except if supported by commercial companies(financial support of the commercial companies also go to the universities,where they work) or feeling of appreciation,awards,recognition by the collegues and the world at large.A lot of time as they are working for government or funded universities ,they cannot join as consultant to commercial hair companies.
I gave few of my research friends the idea to start consulting to smaller labs and hair product commercial companies and help them develop their products at a cost.
Forum members are of interest to HT surgeons as potential paying customers…but you never need to pay a researcher ,because you do not go to him for treatment even if he/she invented it.
Yes ,i agree a focus and organized approach is lacking…Researchers are not guys with business enterprise…they have to focus on research full time.
In every industry it is the entrepreneur who searches for APPLIED FACTS[/b] from researchers and technical experts in a particular field and creates new innovative product,with profit capability.
Henry Ford created worlds most innovative car cylinders with facts from researchers…and these products were not brought to market by these researchers but by the enterpreneur with vision and business expertise like Ford.
IPAD was invented by TCS in india, manufactured by china and marketed to the world by America…
Hence i don’t underestimate the power of idea or facts coming from any source.
On my way to harley street …i see people holding banners reading NHS pay attention to LYMES disease…(government will not fund cosmetic problems as they understand MPB as cosmetic)

My suggestion would be to begin with, hair site admin can have a separate section for scientists,researchers,and members with good research background.
In this section posters may be invited with invitation.
Senior posters can share the discussions at the normal forum threads ,with the rest of the forum members.
I just had a talk with 2 well known, UK HT surgeons , they were fully aware of the forum…and most of the surgeons i met in the congress were very much aware broadly whats happening in the forum.
Believe me some forum members know the subject and follow the research very closely(most of the researchers also come to know about latest work through published papers on internet journals and take their work forward accordingly)

But remember …IT IS NOT JUST WHAT YOU KNOW…BUT WHAT YOU DO WITH WHAT YOU KNOW…
This is what exactly ,i am doing with the help of you all and making new friends …like the star researchers at WCHR 2013, to help share their findings and provide with applied facts(not just information) to reach cure asap…it is very much possible…
Like in trading or any business some ingredients are cost effective and better quality in some part of the world and other ingredients at the other part of the world…Multinational companies take advantage of this…

The days are not far when smaller local companies will serve global customers…
Once, such a private forum thread is formed with invitation than specific questions can be asked to the research community and suggestions can be forwarded…A lot can be done…
You should be aware, how much a forum or members are worth to HT doctors… and to regaine,finasteride, etc. They can all support , if their customers want it.

Originally Posted by FollicleSherlock[/postedby]
Hey Roger I’ll address your points line by line shortly since you indulged me out of interest & I’ll show similar consideration. Right now there is a 48 hr deadline with results that are a MUST to be accomplished by us all.