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Louder

This is how we will get rid of it...

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Louder

Like all of us, I check this forum for updates about a potential cure. I see that there's hope because science is advancing really fast. Lots of technologies are emerging like CRISPR aka gene editing and Live-attenuated vaccines. Live attenuated vaccine have worked really good with chickenpox(I still wonder why all companies focus this type of vaccine... anyway) and for CRISPR, first clinical trials in US are taking place and research show that CRISPR can get to neurons with help of virus as vessel. But there are things that I realize also is that herpes is not life-threatening, it is shameful so people don't go public with it(I don't blame them, I don't want either) and so people around us are not aware of the physical and psychological burden its cause. At the end, science doesn't prioritize treatment of HSV(I understand that HIV needs also attention, I don't even imagine what it feels like to have aids) and it is to the good benefit of the pharmaceutical companies because selling antivirals drugs is a huge market(my friends, big money is against us!).

With all this above taken into consideration, I was wondering how, we herpes sufferer, could participate in fast-tracking a functional cure

What needs the herpes sufferer community is leverage, power and attention to the cause. And I thought that what could give us both three is money, a lot of money. One of the only thing that everybody here has is not a Ph.D. in science, but we all have money and we want a cure.

A way I think we could get a lot of money is by creating a public charity foundation, that will take everybody donation, especially herpes sufferer community. The mission of this foundation would be to finance the research. The mission would also specify that the foundation would give money in the companies that will focus to delivering a functional cure as quickly as possible. It means that we could put pressure on a functional cure to be developed in a country where's drugs regulation don't have a 15 years process.

There is like 250 millions of people suffering around the world with herpes. Imagine that 1 million people could give a thousand dollar to the foundation, we would have 1 billion $! And that's not all, a foundation can invest its money in financial markets. Imagine the interest that we could make with that. We could finance all promising technologies and be orienting research towards HSV and this only with the interest from the money invested. 

What would we need?

  1. Registered foundation(maybe child foundation in other countries for donation tax refund), registered foundation can't do whatever they want with the money and they have to respect the mission goal. It should be a good starting point to gain people trust that their money is in something serious.
  2. The mission of the foundation. It will state that something like the money will be spent on technologies that have shown minimum prove and that we prioritize companies that are willing to take commitment to make it available on market as soon as possible. Even maybe making it available in countries where it doesn't take 15 years to get a drug approved, as soon as it is safe! The word "Safe" will have to be spread everywhere in the document at the base of the foundation. Priority is safety and work done by professional, animal testing, evidence to believe that it is safe, etc...
  3. A website that is light with information about goals, mission, a section to accept donation and right at the top, the real-time money that foundation has earned for the cause. Why put this at the top? To give hope to sufferer that if there is something available for them in the research, they will have some way to fast-track it to the market. Also for the companies that work on promising technologies to aim their research toward HSV to be able to receive financing. At last, if we could get a lot of money from herpes sufferer, imagine the publicity it would make to our cause. Media would talk about it and it would draw attention to the cause in a good way. Money is an energy and we have to make it work for us.
  4. A well-reputed investment firm to manage the money investment and have trust of donators.

 

 

This is the main idea, we would have to go into really really more the details to see if the plan is really possible. I would like the feedback of members. 


 

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Taintedgirl

Cures and better treatments are coming. Just be patient please. People are sick of me saying this but let’s just give it a few years and observe where science goes with it we can’t give up and start fast tracking before we even see what the deal is with crispr and everything else. Let the scientists work out the kinks and get back to us because if we go head on we might miss something eg fast tracked vaccine gives cancer. Let the lab coats work it out they’re honestly trying their best my friend works in a virology lab and he says it’s not easy to kill viruses which is why the effort is now to try and use tools like crispr to cleave important parts but even then mutations are a serious possibility so let’s let them work out the cures then after trials we can back the promising ones.

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lookingforanswers18

I feel we should start now so when a potential cure or functional cure does come, funds would already be available. Yes there are plenty investors out there that have invested for either a sake of a cure, their financial gain, or both. I appreciate every sufferer that has spoken about this virus openly, but more can be done. Personally I think it's good look if the actual suffers came up with our own foundation. No it does not mean the scientists would whip up our miracle treatment overnight, but it shows we are here, we need help, and we mean business, financially & genuinely. This has been spoken on many threads, but getting it started is the hard part. 

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Cas9
12 hours ago, lookingforanswers18 said:

I feel we should start now so when a potential cure or functional cure does come, funds would already be available. Yes there are plenty investors out there that have invested for either a sake of a cure, their financial gain, or both. I appreciate every sufferer that has spoken about this virus openly, but more can be done. Personally I think it's good look if the actual suffers came up with our own foundation. No it does not mean the scientists would whip up our miracle treatment overnight, but it shows we are here, we need help, and we mean business, financially & genuinely. This has been spoken on many threads, but getting it started is the hard part. 

Explain how you would achieve this fundraising among hsv sufferers. Remember, the devil is in the details

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lookingforanswers18

We would honestly have to bounce different ideas around. We could mimic how other foundations were started for other diseases.  That would give us structure. My only fundraising experience is with selling links for College causes at a local car wash, but Im open to learn new things :). It will take alot of work, but it could be done. 

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Jimmyjimmyhuapua

This is also what i mentioned here many times... unfortunately here people dont care about it.. Maybe there is no a  brave person to lead and thats why. All we need is a leader here who will be busy with such things establishing a foundation, visiting for donations in real also. Organizing conferences, talks visiting universities and following their researches. But what all people do here is to come and wait for a new about a cure or vax... or if they are new come here and ask how to cope with it they are so depressed and bla bla...I was visiting here so often but last months i gave up and started to visit website lesser. If someone is expected to be to find a cure for herpes that person will be a herpes sufferer i think. Scientists wont care like us because they dont know how it can be painful mentally and physically. 

we are already spending so much money for vitamin supplements, oils and other things like valtrex and creams. Yes for me i spend 100 dollars everymonth to reduce my sympthoms. I can pay it for a foundation also what i will lose i wont buy 1 month oil and supplements thats all. 

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lookingforanswers18

I have saw this before but there is no contact information. There are phone numbers for coping testing etc.  

Edited by lookingforanswers18
l

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Jimmyjimmyhuapua
9 hours ago, LeftCoast said:

http://herpes-foundation.org/about-american-herpes-foundation/

OR I don't know, you folks could partner with already existing foundations and advocate them to start a research fund. 

They are so passive they dont deserve any kind of funds from patients. It should be a global foundation not only usa universities should be funded japan, chinese, korean, russian, uk, french, australian universities are also so succesfull and they can be funded via a new global foundation

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35hope
19 hours ago, Cas9 said:

Explain how you would achieve this fundraising among hsv sufferers. Remember, the devil is in the details

honestly when it come to medicine the only way i would donate and probably for many others too  is if they promise to give my money back if successful and for larger donations give back with interest, i dont know how someone can set that up thou

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Louder

The first mile would be to check if the foundation is the correct vessel for the main goal. We have to check if a foundation can donate to a private company that have a good first tests results and also if it can donate in other countries(geography is important here, cause if the foundation is based in Canada(for example) and can't spend money outside it, we have to know it).Secondly, a good website, that can accept donation and emit receipt(That part I can do it, I'm an IT professional). Third thing will be to fill legal papers to register the foundation and find people who want to be on the executive board. Their names will be public, so we need at least one sufferer that is not ashamed to go public, we need someone that understand what we feel. I know a guy in Canada that has build a STD dating websites and give interviews. If we are serious I can approach him with the project, I'm sure he would be up to it, he seems like a really nice guy.

Concerns

  1. Foundation needs to be able to invest in company like Excisionbio or Rational vaccine, if we can't spend the money freely, foundation may not be the good vessels.
  2. I know that in Canada you can donate to a foundation and have a tax credit refund (50%), but I don't know if you can receive tax credit donating from another country. If not maybe it could be good idea to have other foundation in partnerships.

So the first step will be to check regulation to see if the foundation is the good vessel. If not, we have to think about another structure that could win people trust and ensure that their money will be spend to good way.

Does someone can check that part or ask someone he knows?

Hope
I would really like that this foundation could raise lot of money and invest this money in financial markets. It could pay for the cost of execution and fundraise on itself. 

Every donor could be registered to the newsletter, and special invitation to clinical trials could be send to them. We could make a deal with the company that we gave money.

 

On this, have faith, together we can make a difference.

L.

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Louder
On 5/9/2018 at 7:38 AM, 35hope said:

honestly when it come to medicine the only way i would donate and probably for many others too  is if they promise to give my money back if successful and for larger donations give back with interest, i dont know how someone can set that up thou

I don't know for you, but I don't care giving money to a fund that could lead to a cure for everyone. Like others said, I would definitely spend this money to help a company like Rational Vaccine get there vaccine through Mexico regulations and bring myself and my lover there to get her protected and maybe provide myself a potential functional cure rather than spend money on supplements and other things that make me still contagious and have the moral obligation to disclose my condition. I see naive people around me all the time in the street and would like one day to feel like them again and put that behind me. That said, this disease is not the end of the world for myself, but I would like that people here have something else to worry in their life.

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35hope
5 hours ago, Louder said:

I don't know for you, but I don't care giving money to a fund that could lead to a cure for everyone. Like others said, I would definitely spend this money to help a company like Rational Vaccine get there vaccine through Mexico regulations and bring myself and my lover there to get her protected and maybe provide myself a potential functional cure rather than spend money on supplements and other things that make me still contagious and have the moral obligation to disclose my condition. I see naive people around me all the time in the street and would like one day to feel like them again and put that behind me. That said, this disease is not the end of the world for myself, but I would like that people here have something else to worry in their life.

i wouldnt mind paying either but it would insure people they won't get scammed and i bet they would get funds real quick by going that route.first thing people going to think is its just some con artist trying to get over on them by having an agreement that they would get their money back if they cant seem to get the project going will make people feel at ease giving them money. the interest part will make people even if they don't have hsv to donate large amounts.

i can see something like that work and generating funds in a decent time frame.

 

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kill.hsv(not Kenny)

We have also a very effective monoclonal antibody against hsv from Germany. It stops spreading 100 percent in vitro. Phase 1 clinical trial is recruiting germans this month. Phase 2 is planed for autumn this year. You can find the study on drks.de . Use HSV as search term

You can switch the language from german to english.

I hope to part of the study.

Edited by kill.hsv(not Kenny)

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sochke
14 minutes ago, kill.hsv(not Kenny) said:

We have also a very effective monoclonal antibody against hsv from Germany. It stops spreading 100 percent. Phase 1 clinical trial is recruiting germans this month. Phase 2 is planed for autumn this year. You can find the study on drks.de . Use HSV as search term

You can switch the language from german to english.

I hope to part of the study.

This vaccine is for the seronegattive people  ,not for the Seropositive people , sorry to say that you cant participate in the trails only healthy individuals can participate.

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kill.hsv(not Kenny)

@sochke: Absolutely wrong ! Where do you know exactly ? Phase 1 is for healthy people, in any case, in any clinical trial all over the world,any time . Its a dosis escalation study, just for the safety. Phase 2 trials are for (hsv2 positive) infected people. And please, don´t tell something that  YOU don´t know exactly. I have a lot of conversatain with the developers. But your descision ;) Do you live in germany ? Did you talk to them ? Are you working for them ? You´re talking about a "vaccine"!? Where do you know? Are you working for this company?  The antibody is able to stop cell 2 cell and axom spread, its effective also for aciclovir resistant strains. But nobody is talking about a vax. Why? Because its untested in humans ! But they do this years. And then... if we have good results, then we can talk about a vax, treadment, whatever. Know its to early. But if it works, then its a huge step forward. If you know so much about that, please tell us more about it and explain it. Please include sources :) Sorry to say, butt you are telling bullshit

Edited by kill.hsv(not Kenny)

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valleynovascotia
6 hours ago, kill.hsv(not Kenny) said:

We have also a very effective monoclonal antibody against hsv from Germany. It stops spreading 100 percent in vitro. Phase 1 clinical trial is recruiting germans this month. Phase 2 is planed for autumn this year. You can find the study on drks.de . Use HSV as search term

You can switch the language from german to english.

I hope to part of the study.

Is this a cure and will it ever e available to the public?

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Fedfan

Looks like trial can include HSV+ people.  Just can't have active lesion at time of trial.

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sochke
5 hours ago, kill.hsv(not Kenny) said:

@sochke: Absolutely wrong ! Where do you know exactly ? Phase 1 is for healthy people, in any case, in any clinical trial all over the world,any time . Its a dosis escalation study, just for the safety. Phase 2 trials are for (hsv2 positive) infected people. And please, don´t tell something that  YOU don´t know exactly. I have a lot of conversatain with the developers. But your descision ;) Do you live in germany ? Did you talk to them ? Are you working for them ? You´re talking about a "vaccine"!? Where do you know? Are you working for this company?  The antibody is able to stop cell 2 cell and axom spread, its effective also for aciclovir resistant strains. But nobody is talking about a vax. Why? Because its untested in humans ! But they do this years. And then... if we have good results, then we can talk about a vax, treadment, whatever. Know its to early. But if it works, then its a huge step forward. If you know so much about that, please tell us more about it and explain it. Please include sources :) Sorry to say, butt you are telling bullshit

Why you getting offended buddy,its there in the site which you provided information,so i did not see information regarding positive people in their eligibility criteria, so i posted based..if you have mOre information than it is good..even i do feel so happy for that..dont take it otherwise.

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Fedfan

@kill.hsv(not Kenny), are you able to provide links to research regarding the German drug?  I am unable to find anything.  Perhaps start a new topic?

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Louder

I saw examples of charity foundation funding biotech startups.

The best example is Cystic Fibrosis Foundation that have made $3.3 billions of dollar and is the largest return of investment a foundation received.

http://fortune.com/2015/05/27/charities-acting-like-venture-capitalists/

There is also a possibility to transfer funds from child foundations to a mother one from one country to another, that way, tax receipts are available in other countries.

This example is Vancouver Foundation in Canada. It has set up a child foundation in US called Friends of Vancouver Foundation for US donors for tax receipt purpose. Friends of Vancouver can only give money to Vancouver Foundation.

So I think that charity foundation can be our vessel to create a fund with a defined mission. So every donor could trust that their money will be used in a good way because foundation have legal obligation to spend money according to the mission.

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kill.hsv(not Kenny)
On 5/12/2018 at 7:12 AM, sochke said:

Why you getting offended buddy,

Sochke, sorry. I was drunk that night (no apology)..... i am very sorry for that!!!!

What i know (you allready can find some infos, that i postetd on HC):

They, from NCT/HDITX are cancer researchers, doing research for antibodys / t-cells and stuff like that. Randomly they found a very effectice monoclonal antibody, based on the monoclonal antibody called mAb hu2c, some links in the bottom of the post.
The antibody is allready humanized, and ready for testing. They are still recuting healthy people for phase ,1 that starts now (as you can see in the drks.de register for trial in germany). The phase 2a trial with infected people is starting in autumn (luckily some things go fast here too :D). They are recuting only in germany, i think because of the rules here.

What, in my opinion sounds really good is:

- the antibody neutralizes free virions in body for 100%
- it stops neuron to cell and axom spread (that sounds really promising for me).
- it stops cell to cell spread.

Some sources (it is not limited to ocular deseases, its generally for HSV1/2):

https://patents.google.com/patent/EP2308895A1/en

http://www.pnas.org/content/pnas/110/17/6760.full.pdf

https://pdfs.semanticscholar.org/2d90/20a3569a7f534444f5ccabc34ecc2357b33c.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5671610/

https://www.biovaria.org/uploads/tx_biotechnologies/P1_neu_HerpHu_mAb_BioVaria_11.5.15.pdf

https://www.researchgate.net/figure/Humanized-mAb-hu2c-retains-the-same-specificity-and-biophysical-properties-of-its_fig1_236140678

https://www.cell.com/trends/pharmacological-sciences/fulltext/S0165-6147(14)00104-7?mobileUi=0

I have no idea if it works. Its just at the beginning of testing.  But i hope. We will see....

 

 

Edited by kill.hsv(not Kenny)

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Hockeyawesome1
On 5/7/2018 at 10:12 PM, Taintedgirl said:

Cures and better treatments are coming. Just be patient please. People are sick of me saying this but let’s just give it a few years and observe where science goes with it we can’t give up and start fast tracking before we even see what the deal is with crispr and everything else. Let the scientists work out the kinks and get back to us because if we go head on we might miss something eg fast tracked vaccine gives cancer. Let the lab coats work it out they’re honestly trying their best my friend works in a virology lab and he says it’s not easy to kill viruses which is why the effort is now to try and use tools like crispr to cleave important parts but even then mutations are a serious possibility so let’s let them work out the cures then after trials we can back the promising ones.

I really hope so. 

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kill.hsv(not Kenny)

 Hi. Phase 1 is completed and they prepare for Phase 2a. Thats all i know.

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