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our future relies on us

which researcher should I fund?

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our future relies on us

Hi guys, so this is my third post already and I've only signed up just half an hour ago, so sorry if it seems as though I am bombarding your with all these questions/ideas.

As a newly diagnosed sufferer I would like to play my role in hopefully one day finding a way to eradicate this life changing virus once and for all. From the research I have read through, to me it appears as though Professor Cullen's work looks most promising at this stage. However I am not oblivious to the possibility that his research has simply gained more coverage than anybody else's. I'm not sure how to create a pole as I've seen someone do before on 'how long they think until a cure will be available', but if you just write what you think I will go from there. I'd like to begin making regular monthly donations to one of the current research attempts going on at the moment and would like your thoughts as to which one you feel that is at the moment.

##Or if maybe other people who make regular donations or would like to begin regular donations want to put there name down and then we can delegate who will donate to what laboratory and how often so we can give them all a chance at curing herpes. I'm not sure how many members there are on this forum but if everyone donated as little as $20 per a month/ $240 a year, I'm sure it would make a big difference. Let me know what you guys think!

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badluck707

Hey our future. I totally agree with you on organizing a donation program. This site is a great site with tons of valuable information. However I just feel as if all that gets done is a lot a talk and nothing proactive. And this site has the power to make a huge movement if everyone could get together. I messaged the staff of this site with "our" idea and they basically said through this site they really could not help which is very unfortunate. There is a site www.herpescureresearch.org that was set up for donation purposes. However, I am not sure how well traffic was directed towards it and it didn't seem like there was very much. If you go to it now it says it's been hacked and is no longer functioning. I just wish that more people would put energy into being proactive in helping to move things forward rather than just talking about it while we just sit here and wait. I hate limiting myself to one researcher but Cullen really has something but has such little funding. And what's even more frustrating the drugs that he would use are already on the market of course would have to be slightly modified but it wouldn't be a 20 year process like most drugs from concept to market. Anyways I'd like to try getting something together. On the sceme of this 20 bucks is nothing.

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Acesheart
Hey our future. I totally agree with you on organizing a donation program. This site is a great site with tons of valuable information. However I just feel as if all that gets done is a lot a talk and nothing proactive. And this site has the power to make a huge movement if everyone could get together. I messaged the staff of this site with "our" idea and they basically said through this site they really could not help which is very unfortunate. There is a site www.herpescureresearch.org that was set up for donation purposes. However, I am not sure how well traffic was directed towards it and it didn't seem like there was very much. If you go to it now it says it's been hacked and is no longer functioning. I just wish that more people would put energy into being proactive in helping to move things forward rather than just talking about it while we just sit here and wait. I hate limiting myself to one researcher but Cullen really has something but has such little funding. And what's even more frustrating the drugs that he would use are already on the market of course would have to be slightly modified but it wouldn't be a 20 year process like most drugs from concept to market. Anyways I'd like to try getting something together. On the sceme of this 20 bucks is nothing.

Hey badluck. We do here exactly what this site was created for. It's sole purpose is information and support! Did you know we have several hundreds of minors here on site? There are college/uni students, who cannot afford proper meds due to lack of funds. There are elderly who just now find themselves with herpes and fixed incomes. We accomplish dairy exactly what we set out to do. Many of here, don't need talks of cures, just need coping skills, something else we provide. You ask anyone here how they feel about what this site offers, the support and informations are number one, second to none! We appreciate what this site owner has given us. Perhaps this forum is not what your needs require? It does however suit the well over 900 ppl I have talked to and we are greatful. Just wanted you to see that we serve a purpose, a damn good one in my book. Back 24 years, internet not invented, we had nothing and had no voice, now this wonderful lady who runs this site has given myself and many like me a place , a safe haven to call ours. I'm very protective of my friends and this site. We offer these services Freely! The more acknowledged members do the physical work to help one another with accurate links and good clean informations. If its not what your here for, I hope you find a site that is. Ace

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badluck707

Ace, never once did I say that this site is anything less than great and I have stated that several times. So I am not exactly sure where you feel that I am in anyway negatively talking about this site. I posted my comment in the research section where I felt it would be most appropriate since this forum discusses current research/research hurdles. I understand that there are many people who can not afford to donate as well as others who are not necessarily looking for a cure. But out of a site that had almost 40k members there certainty are some who do. As well as helping to spread the word to millions of people in the world that yes there is something we can do we don't have to sit back and wait. I'm sorry you felt as if I was trying to attack or knock down what this sites purpose is. No way in any form is that my intention.

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Dummy

wow.. folks really do seem to think a cure is DIM .. or they have given up the hope in one..

Badluck I think your idea is great.. although this forum tends to knock my hopes down of one day being eradicated of this.. Even if not.. knowing that one can't pass it is a cure in itself.. but to hear Ace or anyone say MANY OF US dont WANT or are concerned about a cure.. wowwww.. that really shoots the hopes of it down..

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Acesheart

Dummy, reread my response. I said we don't need talks of cures.. That is a quote! Many surely, most newly infected, they would love a cure. But the purpose of this site is for Support and Informations. This is our main goal to educate those who's doctors have given them none. Mine alone 24 years ago just said "go home, wash up" . That was the extent. My last Dr I just left declared me cured , I was having a second outbreak. So noone says you and many like you don't want a cure. I said our purpose is Support and Informations.. Thank you Ace ;)

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badluck707

Ace you don't think this site could as well designate a section to help fund research along with the support and informative info? If set up correctly it wouldn't be soliciting it would be everyone's right to choose to donate and I'm sure many would. All I can do is propose an idea since I am not a team member. I can sympathize with dummy because it can be frustrating when ideas or remarks to move forward are quickly overlooked. I'm sure folks who are not necessarily looking for cures when coming to this site would not pass up the opportunity to be cured. Lets take this great community and not only offer support and information but to help support a cure that really is on the horizon. I don't see anything wrong with that.

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Harley1986

I can't imagine someone that carries this insidious disease would not want to find a cure. WOW. Even if you are married, and never get an outbreak, or whatever.... I don't know of any circumstance where you wouldn't want a cure. I do wish we could get those who give a damn about a cure to come together and really start a movement of funding. I am willing to give money, but I would want to be sure it gets to where it is most needed. How do we do this? That's the million dollar question!

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lovelyoptimistic

I think setting up a donation fund is a great idea! I too think i've mentioned doing such a thing. But the only concern is trials take millions of dollars and donations, if given, would likely not make a big enough impact to jumpstart the research. That's if we are reallu thinking about splitting the funds b/t all cure/ tranmission prevention research. Now i would still gladly donate, but we would need to find a way to include more than just site members for donations in order to generate enough funds. A lot of people in this forum won't donate...realistically.

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Acesheart
Ace you don't think this site could as well designate a section to help fund research along with the support and informative info? If set up correctly it wouldn't be soliciting it would be everyone's right to choose to donate and I'm sure many would. All I can do is propose an idea since I am not a team member. I can sympathize with dummy because it can be frustrating when ideas or remarks to move forward are quickly overlooked. I'm sure folks who are not necessarily looking for cures when coming to this site would not pass up the opportunity to be cured. Lets take this great community and not only offer support and information but to help support a cure that really is on the horizon. I don't see anything wrong with that.

Message user ,One Bright Day. They have many users who have ideas on where you can donate your money. Contact wwdamron, I belive that is his user, he can direct you. We also have , accelerate the response, he too may be of some help. Many here focuses solely on researchers and what designs are at the front of the pack.

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Dummy

Ace I understand what your saying..

It just seems folks are branded with this whole NO CURE/ INCURABLE thing... those that believe in a higher power I'm really ashamed to see and hear NO FAITH.. As if all diseases were packaged up with a CURE when they were first introduced to society!.. They ALL had to go through rigourous trials and failures until ONE DAY.. BOOM!.. So why should we shoot Herp down as a possible VIRAL upcoming remedied disease as well.. I am struggling myself with the belief, but I'm finding it to be due to so many negative statements and the whole " OH WELL NO CURE BUDDY" sayings.. The fight against this has to start somewhere and even me myself have to get in the mindset that this can and will be destroyed one day.. I pray to God that its within my time on this earth and sooner than later.. So BADLUCK.. if this idea comes to fruititon, I'm with you.. I'll donate regularly.. Yes it will take FOREVER more than likely for this research to move along.. but its a start.. I'm praying that the current companies find success soon!.. I would like to see folks on this forum sit back saying " who needs a cure" then.. LOL.. I'm not trying to sound ignorant and angry at the world.. but if I were God and folks were saying IM COOL WITH THIS VIRUS.. I may say .. OK well I'll concentrate on bringing my miracles to life somewhere else then!!!.. LOL

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Acesheart
I can't imagine someone that carries this insidious disease would not want to find a cure. WOW. Even if you are married, and never get an outbreak, or whatever.... I don't know of any circumstance where you wouldn't want a cure. I do wish we could get those who give a damn about a cure to come together and really start a movement of funding. I am willing to give money, but I would want to be sure it gets to where it is most needed. How do we do this? That's the million dollar question!

Harley what you just mentioned is exactly what some users have said. How about the what if's, like what if it isn't a success. What if they give their hard earned money and nothing comes to a cure. Many have traveled this road. I cannot say I would be in line for a cure, too many people here who are way younger than me, they haven't lived half their lives as I have. They you want it, possibly need it. I'm just living! That is honestly how and why I have only had two outbreaks ever. Outta site outta my head and life and love prevails. Ace :yowie:

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Acesheart
Ace I understand what your saying..

It just seems folks are branded with this whole NO CURE/ INCURABLE thing... those that believe in a higher power I'm really ashamed to see and hear NO FAITH.. As if all diseases were packaged up with a CURE when they were first introduced to society!.. They ALL had to go through rigourous trials and failures until ONE DAY.. BOOM!.. So why should we shoot Herp down as a possible VIRAL upcoming remedied disease as well.. I am struggling myself with the belief, but I'm finding it to be due to so many negative statements and the whole " OH WELL NO CURE BUDDY" sayings.. The fight against this has to start somewhere and even me myself have to get in the mindset that this can and will be destroyed one day.. I pray to God that its within my time on this earth and sooner than later.. So BADLUCK.. if this idea comes to fruititon, I'm with you.. I'll donate regularly.. Yes it will take FOREVER more than likely for this research to move along.. but its a start.. I'm praying that the current companies find success soon!.. I would like to see folks on this forum sit back saying " who needs a cure" then.. LOL.. I'm not trying to sound ignorant and angry at the world.. but if I were God and folks were saying IM COOL WITH THIS VIRUS.. I may say .. OK well I'll concentrate on bringing my miracles to life somewhere else then!!!.. LOL

Hey Dummy , I have faith! When my parents left, faith! When I had breast cancer, twice, faith! When I lost my son, faith! When I had to have hysterectomy, faith! Just went through Cancer, hell Again, still FAITH!! When I first got diagnosed 24 years ago lost faith, few months, but back to my higher power. I don't no longer question what happens in my life, I'm happy to be alive. I'm happy to only have herps. Lost 9 family recently, two of them. just a few weeks ago, yes I still have faith. Dog gone it I chose to live, to be happy and not question what my final destiny will be.. I really am good. I donate to Saint Judes, my daughter spent time in their hospital. So see I am blessed. Sorry some don't, can't, won't accept. It gets easier when acceptance is reached. Ace :)

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Harley1986

Ace, you are one of those that has not truly lived with Herpes daily. I have constant outbreaks, constant pain, and constant rejection. I don't think you understand what those of us that suffer greatly with this in daily living go through. You can't, because you have only had two outbreaks. It doesn't matter how long you have this thing, whether your new to is or have had it for 13 years like I have, a cure it still something we long for. I can't live a normal life with this thing not matter how you look at it. I am contagious 24/7. I would not want to pass this onto another human. I get the whole unconditional love thing, and that special person will love me not matter what, well, I would not be able to live with myself if I passed this on to someone I loved. I used to only get oubreaks once a month during my period, but for some reason in the last 3 years, it has become a daily, constant fight. I have tried everything, Valtrex, Famvir, Acyclovie, counseling, yoga, diet changes, vitamins, herbal supplements, mediation, and the list goes on. You have no idea what it's like, so please don't say there are others that don't long for a cure, we all long for a cure.

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fh12

This virus effects everybody differently. What works for one person may not work for another. Yes, easy to not constantly think about it if you have no symptoms but some are not so lucky. I am going to stay dialed in to the companies making the most progess. It appears that there are so many attempts with so many failures. This virus has made me extremely depressed at times but I am hopeful something will happen within the next three to five years. Hopefully, AIC 316 will be released in that time frame but I am not seeing anything on their phase 3 trial yet. I am betting on a company based outside of the US for the cure such as Coridon. I don't think they have the same hurdles to jump over there.

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badluck707

There is so much time wasted because researcher have to produce a tremendous amount of evidence that their theory will work. If proven to work then that's when big pharma steps in and takes over. So pre-clinical which does require a substantial amount of money isn't as much as what clinical would cost. I use Cullen a lot because he has been the most publicized but stated on his lab website pre-clinical estimated to be 1 million plus or minus. Once pre clinical is completed and if to be proven successful pharma would have to step in. Sure Cullens lab recieved a 250k a year grant for 5 years thats hardly enough to pay saleries. Well 1 million to donate really isn't a lot when you're working with a large volume of people. Cullen wrote in 2008 he could posibly have a cure in 10 years if funding hurdles were crossed. Lets say if everything went perfect and to plan we could of all been cured in 5 years!!! We need to kickstart this process. I wrote a message to the team with the idea of setting up a voting donation forum and it sorta was dismissed. I realize that this site sole mission is to give support and educate people and for that this site really is a wonderful place. What would make this site also great to help support funding is the amout of traffic that goes through here. There are many users and members, you do a google search and this site is normally located at the top in the search results. The traffic is already here. Other donation sites have been created and haven't been able to do much because traffic generation is hard. This site coukd be a one stop shop if you will.

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Harley1986
This virus effects everybody differently. What works for one person may not work for another. Yes, easy to not constantly think about it if you have no symptoms but some are not so lucky. I am going to stay dialed in to the companies making the most progess. It appears that there are so many attempts with so many failures. This virus has made me extremely depressed at times but I am hopeful something will happen within the next three to five years. Hopefully, AIC 316 will be released in that time frame but I am not seeing anything on their phase 3 trial yet. I am betting on a company based outside of the US for the cure such as Coridon. I don't think they have the same hurdles to jump over there.
\\

fh12, thanks, I needed your input.... getting frustrated with this thread.....

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Dummy
Ace, you are one of those that has not truly lived with Herpes daily. I have constant outbreaks, constant pain, and constant rejection. I don't think you understand what those of us that suffer greatly with this in daily living go through. You can't, because you have only had two outbreaks. It doesn't matter how long you have this thing, whether your new to is or have had it for 13 years like I have, a cure it still something we long for. I can't live a normal life with this thing not matter how you look at it. I am contagious 24/7. I would not want to pass this onto another human. I get the whole unconditional love thing, and that special person will love me not matter what, well, I would not be able to live with myself if I passed this on to someone I loved. I used to only get oubreaks once a month during my period, but for some reason in the last 3 years, it has become a daily, constant fight. I have tried everything, Valtrex, Famvir, Acyclovie, counseling, yoga, diet changes, vitamins, herbal supplements, mediation, and the list goes on. You have no idea what it's like, so please don't say there are others that don't long for a cure, we all long for a cure.

I'm new to this and of course I want a cure.. however, I see the folks like Harley and others who are going through absolute HELL over this.. I'm blessed to have a wife who is understanding of how weird this thing is , but is accepting of me and my finding out late in the game... But as mentioned .. I STILL would love to be cured.. I don't get outbreaks but the constant tingling and burning sensation EVERY SINGLE DAY.. is agonizing.. even when I want to say FUCK Herpes for the day.. I can't .. because its says FUCK ME right back!... (sorry for the language but need this to be understood).. This is not a debate against you ACE .. you are a good person and I appreciate the things you say.. but we are adults and allowed to disagree in lanes PROFESSIONALLY... WITH A SMILE .. LOL

I'm not a doc or scientist but to see how much they have seemingly given up on this thing is very FRUSTRATING.. They are also sooooooooo left out in the weeds with not understanding , hence is the reason why most of us end up here (thanks to givers who had no clue in most cases).. Anyway, I do understand that its a risk to give our hard earned money monthly .. but like you .. I contribute to St Judes amongst other orgs in faith that they will do the right thing. .. I feel like why not donate to my own situation with the same faith..

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Acesheart

Oh hey Dummy, I am truly sorry you suffer as many do. I don't want to be odd balled because I haven't suffered. I have suffered in many ways. You are kind of loving , giving person who I would love to see a cure in your life time. I too would not want to pass my h. But I am blessed with my h. I attribute my success to my husband and my meds. That is what I am greatful for everyday. It is all I'm trying to say. Our site has many avenues on which one user can travel to find who is keeping up with cures. Those names I mentioned in one of my responses, look them up, inbox them. I believe they even have a secret Facebook club. Maybe that will help to talk to others seeking the funds and the cures. Take care, Ace.

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lovelyoptimistic

I agree with everyone wanting a cure. I got this when i was 24 and i just cannot imagine living my life with this or passing it on. Im praying that those therapies in trials will work in the next 5-10 years. Funding and fda regulations are major issues when it comes to cures for this virus. I don't see how some people would not want a cure. If it meant you did not have to worry about it AT ALL for the rest of your lives...how could you be content with worrying about spreading it or future outbreaks

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fh12

Clinicaltrials.gov search genital herpes click open studies Aicuris (AIC316), Agenus (HerpV) and Genocea are all still recruiting.

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Dummy

THanks I tried to join .. believe me.. but I don't meet the requirements or the location.. :-(

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Cymenthy

I came to this site looking for information, help and support, and I found all three, and am very grateful. I do believe that is the main function of this group, and should remain so. However, a cure is never far from my mind, as I as sure it is to many of us. Yes, if I were married and had a supportive and loving partner, I would not be as concerned for a cure for myself, but would still be desirious of a cure for others. This is a societal problem, and seems to be getting worse and not better as more and more people become infected. I am wondering what would happen if an affiliate site (separate but of kindred spirits) were set up solely to publish reports of research with contained links to companies and labs doing state of the art research? I am sure these people would love to receive donations, and might even set up sites to receive money. Looks like it would take some coordination to set up such a site, but maybe someone out there would like to do that. There would need to be blogs and places for people to contribute information. Just a thought

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our future relies on us

I am sure that every single person who is an active member of this forum would be more then happy if scientists were able to develop a cure for this virus. To everyone who has been able to make a life for themselves and move on from herpes, I am happy for you, but do you not still hope that a cure is on its way? If you could play your role in making a difference to speeding up research, would you not do it? Ok so maybe many of you are older and have found your partners and had your children but what if it was your child in 10-20yrs who was diagnosed AND they didn't/ couldn't find a partner, wouldn't you want to, if not for us, but for future generations completely eradicate this virus from our lives. It would be even better if they could cure it in our lifetime and we should never lose hope.

Now I understand why the moderators would not want to include a donations page on this website, that is a lot of responsibility and they already do such a good job of maintaining this website. But what if we could just start a new thread/poll etc asking how many people would be interested in getting involved in something like this. We'll start small and set an aim. Lets say to raise $20 000 within one year. That would mean about 85people a month to donate $20 and we can vote on the top 2 or 3 or 4 etc who seem most promising and divide the money equally. Once we get all the people together we can start a whole new website or even just email people. Just some thoughts anyways, start small and work your way up. I really want to see this thing cured that is not going to happen if we don't all come together on this.

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badluck707

I could not agree with you more future. This is our time to make a difference. And in all reality a cure is in our sights yes I know may ideas have failed before but we have never known as much about this virus as we do now. We need to get the moderators to help and to see this idea. It could be huge and we all could make a great difference. How can we do this? I hate for this idea to just be talked about and then nothing gets done. Lets do something!!!

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