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Flystud

Letter to Bill & Melinda Gates Foundation

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Flystud

Sent this to the Bill & Melinda Gates Foundation. We need to stress the many insidious diseases that Herpes causes to get attention particularly the fact that it affects the daily lives of all.

To the Grants Committee for Bill & Melinda Gates Foundation,

I would like to petition for funding for research for a cure towards Herpes Virus 1 & 2. The herpes virus is often portrayed as simply a cold sore or an STD. However, this virus is much more insidious in nature and causes much more dangerous health problems such as Ocular Herpes which is the leading cause of corneal blindness in the developed world and Herpes Encephalitis which has a 70% morbidity rate if left untreated and even with treatment 90-95% of afflicted people are left with mild-to-severe neurological deficits that prevent them from leading normal lives. It also causes the Ramsay Hunt's Syndrome, Meniere's Disease to name some ear related illnesses which ultimately lead to deafness. Apart from the actual diseases, the knowledge of a lifelong afflicition that can anyday spontaneously cause Ocular Herpes or even worse Herpes Encephalitis is cause for depression and even high rates of suicides amongst sufferers that otherwise would be leading normal, healthy lives. It is estimated that roughly 50-90% of all adults are exposed to at least one form of this virus albeit somewhere between 10-20% are symptomatic. But for those that are, life is miserable. There is simply not enough being done towards raising awareness and funding research towards curing this virus altogether. Given this virus has been within mainstream society for so many years, society as a whole has become jaded towards the real risks with this virus particularly herpes 1 which is often labeled simply as a "cold sore" when in reality it is much more insidious. There are three research universities with great ideas, however short in funding. My fellow petitioners have exchanged emails with several of these professors to inquire the amount of funding they would require. I have listed the estimated amount they need to speed up the process. Please take a hard look at the research and potentially helping hundreds of millions of people from this dreadful afflication.

Duke University (Cure)

Dr. Bryan Cullen at Duke University conducted a study of herpes and found a glimmer of hope for a cure. Herpes simplex viruses - both the oral (type 1) and genital (type 2) varieties, hide from the immune system and from current antiviral drugs by hiding in nerve cells in an inactive "latent" form. Researchers at Duke University are developing a novel approach that they believe will force the virus out of this latent state and allow it to be immediately killed with standard antiviral drugs such as acyclovir. Dr. Bryan Cullen has said he needs roughly $2 million over the next 5 years to conduct pre-clinical trials for this approach.

Dr. Bryan Cullen Contact Info:

http://mgm.duke.edu/faculty/cullen/

Duke University Donation Form:

https://www.gifts.duke.edu/

U.S. Department of Health & Human Services - National Institues of Health

(Learning How Cold Sore Viruses Hide Article with Dr. Bryan Cullen)

http://www.nih.gov/news/research_matters/july2008/07142008herpes.htm

University of Florida (Inactive virus)

Professor David C. Bloom at University of Florida which also includes researchers and clinicians from obstetrics and gynecology, orthopedics and ophthalmology and the university's Genetics Institute -- came up with a way to cut the virus' RNA to prevent reactivation. By designing special enzymes called hammerhead ribozymes, the researchers were able to target a so-called "late" gene that releases its protein product relatively late after infection. With late genes, partial corruption of the genetic material is sufficient to shut down virus production, as opposed to "early" genes, which would require total inactivation to hinder the process. Professor Bloom has mentioned that he would require roughly $200K to continue his research for HSV 1 and HSV 2.

Potential new herpes therapy studied:

http://news.ufl.edu/2009/02/03/herpes-2/

HSV-1 Research Program College of Medicine (016081)

ttps://www.uff.ufl.edu/OnlineGiving/FundDetail.asp?FundCode=016081

HSV-2 Research Program College of Medicine (016087)

https://www.uff.ufl.edu/OnlineGiving...undCode=016087

Harvard Medical School (Vaccine)

Professor David Knipe of Microbiology and Molecular Genetics Chair, Harvard Virology Program studies the molecular and cellular biology of herpes simplex virus productive and latent infection and the mechanism of the host immune response to HSV. They've also have been studying a candidate genital herpes vaccine that we have developed, and we are constructing and studying HSV recombinants as vaccine vectors for AIDS, SARS, West Nile and anthrax vaccines.

Professor David Knipe Lab Research Contact Info:

http://knipelab.med.harvard.edu/contact.html

Professor David Knipe Lab Research Fund:

http://knipelab.med.harvard.edu/vaccine.html

All three of these colleges are in need of research funding.

U.S. National Library of Medicine explaining HSV-1:

http://www.nlm.nih.gov/medlineplus/e...cle/000606.htm

U.S. National Library of Medicine explaining HSV-2:

http://www.nlm.nih.gov/medlineplus/e...cle/000857.htm

Very Respectfully,

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Flystud

Main problem with them is that they require data sharing so I am not sure whether Duke/UofF/Harvard will go for that. Anyways, got a response back saying they get millions of emails so it may not be possible to respond individually.

If Bryan Cullen only requires $2mm, we need to get in touch with celebs / run an online donation site that allows people to donate to a fund that will collect money and distribute to the respective research orgs.

Anyone willing to start a Herpes 501c(3) org so that we can collect money using it to distribute towards the most promising underfunded research?

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Flystud

overall, hate to say it, but i am depressed. IT just seems progress will continue to be very slow and I need to think of a 20 year horizon vs 3-5 years. i hope they find something within this decade. its been so long since there has been any new treatment towards this disease. ugh, i just hope HSE or Ocular herpes doesn't get us before then. its like this weight on you..

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Cure Coming Soon

Flystud, thanks for sending them an email. Regardless of the automatic reply you received, it's still possible that they may review the email.

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ntdc
overall, hate to say it, but i am depressed. IT just seems progress will continue to be very slow and I need to think of a 20 year horizon vs 3-5 years. i hope they find something within this decade. its been so long since there has been any new treatment towards this disease. ugh, i just hope HSE or Ocular herpes doesn't get us before then. its like this weight on you..

You have a higher odds of winning the lottery than getting HSE probably.

It [HSE] is estimated to affect at least 1 in 500,000 individuals per year. About 1 in 3 cases of HSE result from primary HSV-1 infection, predominantly occurring in individuals under the age of 18; 2 in 3 cases occur in seropositive persons, few of whom have history of recurrent orofacial herpes. Approximately 50% of individuals that develop HSE are over 50 years of age.

So by that estimate in America only 600 people a year suffer HSE. As it says above it occurs mostly in the very young and very old. Only 400 a year will get the disease as a reocurrance from HSv infection.

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Flystud

The probability of dying by a plane crash is 1 in 20mm. The probability of winning a single state lottery is 1 in 18mm. The probability of winning a multi state lottery is upto 1 in 120mm. 1 in 0.5mm is not particularly conforting especially when I don't know if this stat is based on those infected or just total population in which case its 1 in 0.25mm or even lower. I think the probability of getting HSE are understated and worrisome and as a result I feel weighed down by the prospect. I agree it is more common in under 20 and over 40, but still. I want to do everything to speed up any researdch to cure this.

HIV has millions of dollars of money being spent on to find a cure and still nothing after 20 years. Herpes has very little, wonder if there ever will be something :(

I want to get money organized for this in a systematic fashion. I will think of a way to buy a domain and set up a fundraising meter

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solvingtheproblem

work with the moderators

Hi FlyStud --

I think it's great that you are undertaking this cause with such initiative! I believe a "donation gateway" that

- has information about UF/Duke/Harvard/Bill Halford's research programs

- information about Protecting Future Generations

- information about H-C.com

- a "click and pay" functionality for each program -- hopefully directly linked to the online donation system for the university, where feasible

- has the ability to accept a "fix it and forget it" perpetuatal donation (ie., $1/day, $100/month, etc). so people can have donations automatically deducted

- a donation "thermometer gauge" for each program

would be highly successful. The moderators here at H-C.com have recently put together a donation site -- I think this would be the best place to route all the donation traffic. It's centralized and legitimate -- which will help with donors feeling comfortable about their donation.

Rather than re-creating the wheel, I'd suggest that you contact the HC.com support team, and discuss with them the best way you can help them further develop the donation site -- perhaps the nuts and bolts of the thermometer tracker might be a good place to start.

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ntdc
The probability of dying by a plane crash is 1 in 20mm. The probability of winning a single state lottery is 1 in 18mm. The probability of winning a multi state lottery is upto 1 in 120mm. 1 in 0.5mm is not particularly conforting especially when I don't know if this stat is based on those infected or just total population in which case its 1 in 0.25mm or even lower. I think the probability of getting HSE are understated and worrisome and as a result I feel weighed down by the prospect. I agree it is more common in under 20 and over 40, but still. I want to do everything to speed up any researdch to cure this.

You should look into it your odds are very low. Just based on the paragraph i cribbed earlier

1 - I told you its 600 americans per year, calculated based on 1/500,000 in a population of 300m people.

2 - If eliminate people under 50 the odds drop by half to 300 americans per year (1/1m)

3 - Since your already infected that drops your odds another 1/3 since you clearly did not get it during your initial infection. So now we're down to about 180 people per year.

The citation says "predominately under 18" since thats not quantifiable I cant lower your odds anymore based on that. So I can say your chance of it is about 0.00006% per year. Of those who get it it's almost certain many are HIV+. I can't find a number on that but it's a reasonable assumption.

Worrying about HSE from an HSV infection is like worrying about dying from catching the flu. Yes it happens to people, but the odds are so much against it it's not even worth worrying about.

As for your odds, you are citing the wrong statistics. I am talking about per YEAR you are talking about per play/encounter. So lets look at some per year stats.

Your odds of dying in a car crash are 1/18,000 per year ( or 1/200 over your life).Do you not take cars? If you walk your odds of being killed are 1/45,000 ( 1/590 lifetime), hell overall odds of being killed in a transportation accident are 1/5,000 per year (1/77 over lifetime) better not leave your house!

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Flystud
You should look into it your odds are very low. Just based on the paragraph i cribbed earlier

1 - I told you its 600 americans per year, calculated based on 1/500,000 in a population of 300m people.

2 - If eliminate people under 50 the odds drop by half to 300 americans per year (1/1m)

3 - Since your already infected that drops your odds another 1/3 since you clearly did not get it during your initial infection. So now we're down to about 180 people per year.

The citation says "predominately under 18" since thats not quantifiable I cant lower your odds anymore based on that. So I can say your chance of it is about 0.00006% per year. Of those who get it it's almost certain many are HIV+. I can't find a number on that but it's a reasonable assumption.

Worrying about HSE from an HSV infection is like worrying about dying from catching the flu. Yes it happens to people, but the odds are so much against it it's not even worth worrying about.

As for your odds, you are citing the wrong statistics. I am talking about per YEAR you are talking about per play/encounter. So lets look at some per year stats.

Your odds of dying in a car crash are 1/18,000 per year ( or 1/200 over your life).Do you not take cars? If you walk your odds of being killed are 1/45,000 ( 1/590 lifetime), hell overall odds of being killed in a transportation accident are 1/5,000 per year (1/77 over lifetime) better not leave your house!

I hear you. I'm reading a research piece from Feb 2009 which states that HSE occurs at a rate of 3 / 100,000 ppl in the US. 15x higher then 1 / 500K.

http://74.125.153.132/search?q=cache:UahkZwtD6bsJ:www.emedicine.com/RADIO/topic334.htm+Herpes+Encephalitis+in+the+United+States&cd=5&hl=en&ct=clnk&gl=sg

Btw, for me, I have been getting headaches which is scary but its been a month and it seems its more sinus related then not. I am in my 20s and just got HSV-1 last month in conjunction with the swine flu. Sucks. Took acyclovir for 10 days. Not sure how life is going to be with this disease. I am nervous about HSE though due to the high mortality rate.

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ntdc

LOL yes right before it says "The disease is rare".

1/100k vs 3/100k still almost nothing in real number terms your chance of

dying of cancer or heart disease are much much higher (1/5, 1/7 respectively)

Take an aspirin if you get headache remember HSV-1 can inflame your trigeminal nerve which obviously can give you a headache i get them

all the time during/before outbreaks. It doesn't mean you have a brain

infection.

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Movingslowly

Im sending more emails out today. I guess we'll just have to keep pushing until society takes this seriously.

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Movingslowly
Sent this to the Bill & Melinda Gates Foundation. We need to stress the many insidious diseases that Herpes causes to get attention particularly the fact that it affects the daily lives of all.

To the Grants Committee for Bill & Melinda Gates Foundation,

I would like to petition for funding for research for a cure towards Herpes Virus 1 & 2. The herpes virus is often portrayed as simply a cold sore or an STD. However, this virus is much more insidious in nature and causes much more dangerous health problems such as Ocular Herpes which is the leading cause of corneal blindness in the developed world and Herpes Encephalitis which has a 70% morbidity rate if left untreated and even with treatment 90-95% of afflicted people are left with mild-to-severe neurological deficits that prevent them from leading normal lives. It also causes the Ramsay Hunt's Syndrome, Meniere's Disease to name some ear related illnesses which ultimately lead to deafness. Apart from the actual diseases, the knowledge of a lifelong afflicition that can anyday spontaneously cause Ocular Herpes or even worse Herpes Encephalitis is cause for depression and even high rates of suicides amongst sufferers that otherwise would be leading normal, healthy lives. It is estimated that roughly 50-90% of all adults are exposed to at least one form of this virus albeit somewhere between 10-20% are symptomatic. But for those that are, life is miserable. There is simply not enough being done towards raising awareness and funding research towards curing this virus altogether. Given this virus has been within mainstream society for so many years, society as a whole has become jaded towards the real risks with this virus particularly herpes 1 which is often labeled simply as a "cold sore" when in reality it is much more insidious. There are three research universities with great ideas, however short in funding. My fellow petitioners have exchanged emails with several of these professors to inquire the amount of funding they would require. I have listed the estimated amount they need to speed up the process. Please take a hard look at the research and potentially helping hundreds of millions of people from this dreadful afflication.

Duke University (Cure)

Dr. Bryan Cullen at Duke University conducted a study of herpes and found a glimmer of hope for a cure. Herpes simplex viruses - both the oral (type 1) and genital (type 2) varieties, hide from the immune system and from current antiviral drugs by hiding in nerve cells in an inactive "latent" form. Researchers at Duke University are developing a novel approach that they believe will force the virus out of this latent state and allow it to be immediately killed with standard antiviral drugs such as acyclovir. Dr. Bryan Cullen has said he needs roughly $2 million over the next 5 years to conduct pre-clinical trials for this approach.

Dr. Bryan Cullen Contact Info:

http://mgm.duke.edu/faculty/cullen/

Duke University Donation Form:

https://www.gifts.duke.edu/

U.S. Department of Health & Human Services - National Institues of Health

(Learning How Cold Sore Viruses Hide Article with Dr. Bryan Cullen)

http://www.nih.gov/news/research_matters/july2008/07142008herpes.htm

University of Florida (Inactive virus)

Professor David C. Bloom at University of Florida which also includes researchers and clinicians from obstetrics and gynecology, orthopedics and ophthalmology and the university's Genetics Institute -- came up with a way to cut the virus' RNA to prevent reactivation. By designing special enzymes called hammerhead ribozymes, the researchers were able to target a so-called "late" gene that releases its protein product relatively late after infection. With late genes, partial corruption of the genetic material is sufficient to shut down virus production, as opposed to "early" genes, which would require total inactivation to hinder the process. Professor Bloom has mentioned that he would require roughly $200K to continue his research for HSV 1 and HSV 2.

Potential new herpes therapy studied:

http://news.ufl.edu/2009/02/03/herpes-2/

HSV-1 Research Program College of Medicine (016081)

ttps://www.uff.ufl.edu/OnlineGiving/FundDetail.asp?FundCode=016081

HSV-2 Research Program College of Medicine (016087)

https://www.uff.ufl.edu/OnlineGiving...undCode=016087

Harvard Medical School (Vaccine)

Professor David Knipe of Microbiology and Molecular Genetics Chair, Harvard Virology Program studies the molecular and cellular biology of herpes simplex virus productive and latent infection and the mechanism of the host immune response to HSV. They've also have been studying a candidate genital herpes vaccine that we have developed, and we are constructing and studying HSV recombinants as vaccine vectors for AIDS, SARS, West Nile and anthrax vaccines.

Professor David Knipe Lab Research Contact Info:

http://knipelab.med.harvard.edu/contact.html

Professor David Knipe Lab Research Fund:

http://knipelab.med.harvard.edu/vaccine.html

All three of these colleges are in need of research funding.

U.S. National Library of Medicine explaining HSV-1:

http://www.nlm.nih.gov/medlineplus/e...cle/000606.htm

U.S. National Library of Medicine explaining HSV-2:

http://www.nlm.nih.gov/medlineplus/e...cle/000857.htm

Very Respectfully,

Can you give me the direct link to send this email as well? I'm actually going to tweek it a little but still focus of HSV-1, mainly because Professor Bloom and Cullen are starting with this virus first and then moving onto HSV-2.

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