Let's Do Something

[livingwithhope]

I have looked online and have not been able to find a nonprofit organization geared specifically at finding a cure/vaccine/etc. for HSV. If anyone knows of one, please send me the link.

I've got this idea that starting one could only be beneficial to our cause. People wouldn't have to be leery about donating money because a tax exempt filing would make the organization a corporation. With a corporation (especially a nonprofit) comes accountability of where the money is going. We don't really know who is going to be the first or has come the farthest to finding a cure, but at least we can help then. Let's be proactive about this.

Any suggestions? (And seriously, no negativity here. If my idea sucks, fine. Drop a line when you have a better one.)

[bella303]

I've posted in the past (either here or on another board) if anyone was interested in starting one. However, I did not receive any replies.

Supporters for HIV/AIDS research/cure are many people strong. Supporters for Herpes research/cure are many people weak. If people afflicted with Herpes would ban together, our voices would be heard. If people afflicted with Herpes would support and donate for research, there would already be a vaccine and cure (for the currently afflicted).

If you are serious, let me know. I will support you.

[livingwithhope]

Bella I am so glad you responded. I am dead serious. I will do some research on starting one. I researched it once for another reason so I know a little bit about it, but this is well needed and if enough people supported it, we could make a difference for sure. I've always heard it was hard and a lot of work, but it's way worth it to me. If you have any ideas, suggestions, etc. let me know. Obviously, a name will be needed. I've been playing with acronyms, but nothing catchy has caught my eye yet...

[motorcyclemaintainance]

I also find it mystifying that there's no easy way to donate to help research. I'm sure that many people would be interested in helping out with this.

I also find it strange that there aren't any multi-millionaires out there who have contracted symptomatic HSV and decided to fund research.

There is, in fact, a way to donate to Herpes research here:

http://www.ashastd.org/involve/involve_donate_how.cfm

However, I can't donate here because I'm not a resident of the USA or Canada. These are the only two options on the address form (which I assume is matched to the credit card).

Also, I can't tell whether the ASHA will spread donations between research projects, or if they're channelling it all to the most-likely-to-succeed project.

We really are in need of a website with credibility that allows funds to be sent directly to whichever research team can demonstrate the best likelihood of success. We'd also need a marketing campaign to attract people to the donation site.

On the other hand, GSK's patent for Valtrex expires next year, and this has been a hugely lucrative drug for the company. Logic would suggest that someone at GSK would have seen this coming, and invested money into a replacement product. So where is GSK's new and updated replacement for Valtrex?

There is none, and presumably not for lack of money? Is it more likely that the technical problems far outweigh any funding problems?

[metropolitan]

I was thinking we should just make a site called Make Herpes History and funnel all the money to the U. Florida hammerhead ribosome people.

[marias221]

im trying to do something herein LA im tryingto get a big march going by the end of next month im going to email ryan from Amrican idol to see if he can metion it on his radio show and i even posted a tread so people can write to him there stories to him but it seam that most people on this borad are scard to write to him bit im not if people really wantto find a cure they wolud say im going to post on this theat


if you want a cure post on here your stories the more the better

http://herpes-coldsores.com/messagef...ad.php?t=14127

[motorcyclemaintainance]

I don't know much about how the pharmaceutical industry works, but I'm very confused about this: There is a massive market for a successful treatment, but I often read posts that say lack of investment in research is the problem.

It doesn't make sense that these big drug companies aren't investing money in a solution to HSV. It just doesn't seem to add up. I know there are these ludicrous conspiracy theories that all the drug companies have made a secret pact with each other not to undermine sales of suppressive meds. But that's ridiculous.

Perhaps they really are doing all they can.

Can anyone give actual evidence of the pharmaceutical industry's intentional neglect of herpes research? And also their motivation for doing that. It seems like extremely bad way to run a business.

I really want to believe that funding is a problem, because then we can address it with fund-raising, donations etc. But how can we be certain that it's lack of money that's holding up the developments?

[bella303]

Livingwithhope,

Here is the link to start up a Herpes Organization, http://www.herpesalliance.org/support_start_own.htm. If you are not sure how to get an Federal EIN, let me know. I can get submit for one.

Possible Names:

Red Dots Research Fund (RDR-F)
I had an idea to start a 5K/10K running event with a line of Red Dots along the bottom of the souvenir shirt and one big red dot on the back of the shirt with a runner's running shoe squashing the red dot.

Make Herpes History (MHH)
Our mission is to provide scientists and researchers with proper funding to make herpes history. <blah, blah>

Other names are welcomed.... I can put up the website after we get a name to start getting the word out. Once we get the organization together (i.e. paperwork), then we can start collecting funds.

marias221,

I think a march is a great idea!! Please also add info on neonatal herpes. Because people are drawn to the innocent - babies. And it will tear at the hearts of people that babies are either dying (recent news - a baby died from being kissed by an affected mom) or catching it, which can also have drastic affects.

motorcyclemaintenance,

I believe that funding has been going towards HIV/AIDS research (based on an article I just read). And also, no one that is Herpes afflicted has made a big fuss as HIV/AIDS. The Herpes afflicted goes into hiding, which is sad.

Big Pharms control the industry. So, what ever will bring in maximum profits - an antiviral that people will need to take on a regular basis.

All, I think that if we also educate the public about herpes affecting infants and causing other illnesses, it will make the public more alert and aware. We would get more support.

The University of Florida are accepting donations for their own research. So, this is a direct donation.

[bella303]

The following is a post on Craigslist from someone in Philadelphia......

************************************************** *

Herpes Cure -- looking for Scientist with antagomir experience (philadelphia)

Reply to: sale-938789811@craigslist.org [?]
Date: 2008-11-30, 12:48AM EST


I know too many people that have been affected by this.

Too many research papers study illnesses and suggest treatment.

I am looking for someone who is looking to pioneer human testing for a cure for HSV1, possibly HSV2 within one year.

Use the antagomir mRNA 122 if need be or apply your own theory into action.

If US laws on gene therapy are too constrictive for progressive research, we can hold research overseas.

I have a good amount of funding secured for this project.
Please reply with your qualifications and ideas

[motorcyclemaintainance]

bella303,

That's a very intriguing and encouraging post on Craigslist. Thanks for sharing it with us. So maybe there are a few millionaires out there looking for a solution.

The mRNA technology suggested in that post looks interesting. And since the significant discoveries in this field are extremely recent, it's not totally implausible that some enterprising maverick scientist funded by a wealthy party might come up with something.