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dont quit!17
4 hours ago, MikeHerp said:

I agree.  I've considered writing letters to some high profile people. 

Pls do what you can to spread the word online and social media. 

Just wish there was some celebrity or someone known who championed our cause. 

Maybe attempt to contact Usher? He takes a brutal beatings on Social Media regarding his HSV. Since he is probably the most famous and probably most ridiculed celebrity you can spin a letter to him stating that his help would be invaluable! It seems like everybody knows about his HSV, unlike other celebrities like Terence Howard and or Jim Carrey. 

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Pokemon
2 hours ago, dont quit!17 said:

Maybe attempt to contact Usher? He takes a brutal beatings on Social Media regarding his HSV. Since he is probably the most famous and probably most ridiculed celebrity you can spin a letter to him stating that his help would be invaluable! It seems like everybody knows about his HSV, unlike other celebrities like Terence Howard and or Jim Carrey

Hmm. I personally do not know for a fact that Usher or any of these people has the disease. I would be cautious in my approach.

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T9000

If anyone is a member of the herpes subreddit you might try and post it over there.

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Miss Horne
11 hours ago, MikeHerp said:

For anyone not up to date what Fred Hutch is doing and why this fund raiser counts, I suggest first reading this from 2016:

https://www.fredhutch.org/en/news/center-news/2016/09/can-gene-editing-cure-herpes.html

Then, there is the following report froma Symposium held in May last year.  I recieved a copy so I know it's legit--the only thing that the report lacks is detail, but it appears at least that they've managed to gene edit close to 20-30% of latent HSV in mice.  So their efficiency increased from 2-4% in the 2016 experiment, to 20-30% last year.  Significant progress, and in line with Dr. Jerome's comments in 2016, that gene editing approach could be made more efficient and that it may start out as a partial cure as the approach is made increasingly efficient. 

2018 Colorado Alphaherpesvirus Latency Society Symposium
 
Meeting Report on the 8th Annual Symposium of the Colorado Alphaherpesvirus Latency Society (CALS), held on May 1619,
2018, in Vail, Colorado
 
Keith R. Jerome, Fred Hutchinson Cancer Research
Center, presented data showing efficient in vivo gene editing
of latent HSV via adeno-associated virus (AAV)-mediated
delivery of meganucleases or CRISPR/Cas9. HSV infections
remain a common, serious problem associated with significant
morbidity. After primary infection, HSVestablishes latency in
the peripheral nervous system. Latent virus is the source for
viral reactivation and the recurrence of clinical disease and is
not eliminated by current antiviral therapy. Despite much ef-
fort, a vaccine remains elusive. Therefore, there is a need for a
novel therapeutic approach that would cure latent HSV infec-
tion. This group has evaluated a potentially curative strategy,
in which HSV-targeted endonucleases induce mutagenesis of
essential HSV genes, thus disabling the virus and rendering it
incapable of replication or reactivation from latency. Using a
well-established mouse model system, they demonstrated that
AAV can efficiently deliver anti-HSV meganucleases or
CRISPR/Cas9 to the trigeminal (TG) and superior cervical
(SCG) ganglia of mice with latent HSV-1 infection. Gene
editing efficiency approached 30% of HSV genomes in SCG
for animals treated with meganucleases and nearly 20% in the
corresponding TG. Droplet digital PCR analysis suggested
that this difference in efficacy may relate to more efficient
AAV delivery to SCG, along with lower HSV loads in SCG
relative to TG. Interesting ly, CRISPR/Cas9, while having
very high activity in vi tro (> 50% gene edi ting of latent
HSV), showed little efficacy in vivo (gene edit ing < 1%).
This lab ascribed this to the large size of the Cas9 coding
sequence, which is close to the packaging limits of AAV and
thus limits available optimizations; this contrasts with the very
small meganucleases, which can be packaged into more effi-
ciently expressin g self-complemen tary variants of AAV.
These results support continued efforts towards gene editing
as an anti-HSV strategy, emphasize the importance of efficient
delivery for in vivo gene editing applications, and should en-
courage workers in the field to appreciate the full diversity of
targeted nucleases available beyond simply CRISPR/Cas9.
All animal studies were performed following guidelines and
protocols approved by the Institutional Animal Care and Use
Committee of the Fred Hutchinson Cancer Research Center
(protocol number 1865), Assurance #A3226-01. No human
studies were performed

Why doesn’t this info appear on the Jerome or Fred Hutch website I wonder? 

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T9000
13 hours ago, oneday said:

We so need a high profile person to get behind hsv research. MND break through just got a push here in Australia because a famous sportsman who suffers from Motor neuron too contributed a generous donation and bam..a better treatment is soon available now improving the conditon in 70% of people in the recent trial.

If I were a billionaire I'd probably try to fund or partially fund a prophylactic vaccine trial such the einstein college vaccine. It's too bad that the US doesn't just fund the trials themselves and auction it off to the highest bidder, or institute some sort of cost control on those types of trials. I say this because prophylactic vaccines almost represent a sort of public domain health intervention where just about everyone benefits, and the government basically manages the administration of it to children. It's also unquestionably true that the best way to deal with herpes is to prevent people from becoming infected in the first place. Regardless, it's a shame that any good vaccine concept should ever go to waste, or that any good research shouldn't be able to secure funding. I think it says a lot of unfortunate things about the world we live in that such things are able to happen.

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Miss Horne

I was hoping we would have raised more money by now. 

I’m hoping more will donate when they get paid next month :thumbsup:

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MikeHerp

I just wish this fund raiser was started a couple of years ago.  This will take some time.  

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Lulupazoola

I donated $100.  They were quick to make it easy for us!

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MikeHerp
On 1/12/2019 at 4:54 AM, T9000 said:

If anyone is a member of the herpes subreddit you might try and post it over there.

has anyone done this?  

I suggest posting the fund raiser link, together with the following: 

___________________________________________________________________

 

For anyone not up to date what Fred Hutch is doing and why this fund raiser counts, I suggest first reading this from 2016:

https://www.fredhutch.org/en/news/center-news/2016/09/can-gene-editing-cure-herpes.html

Then, there is the following report from a Symposium held in May last year.  

2018 Colorado Alphaherpesvirus Latency Society Symposium
 
Meeting Report on the 8th Annual Symposium of the Colorado Alphaherpesvirus Latency Society (CALS), held on May 1619,
2018, in Vail, Colorado
 
Keith R. Jerome, Fred Hutchinson Cancer Research
Center, presented data showing efficient in vivo gene editing
of latent HSV via adeno-associated virus (AAV)-mediated
delivery of meganucleases or CRISPR/Cas9. HSV infections
remain a common, serious problem associated with significant
morbidity. After primary infection, HSVestablishes latency in
the peripheral nervous system. Latent virus is the source for
viral reactivation and the recurrence of clinical disease and is
not eliminated by current antiviral therapy. Despite much ef-
fort, a vaccine remains elusive. Therefore, there is a need for a
novel therapeutic approach that would cure latent HSV infec-
tion. This group has evaluated a potentially curative strategy,
in which HSV-targeted endonucleases induce mutagenesis of
essential HSV genes, thus disabling the virus and rendering it
incapable of replication or reactivation from latency. Using a
well-established mouse model system, they demonstrated that
AAV can efficiently deliver anti-HSV meganucleases or
CRISPR/Cas9 to the trigeminal (TG) and superior cervical
(SCG) ganglia of mice with latent HSV-1 infection. Gene
editing efficiency approached 30% of HSV genomes in SCG
for animals treated with meganucleases and nearly 20% in the
corresponding TG. Droplet digital PCR analysis suggested
that this difference in efficacy may relate to more efficient
AAV delivery to SCG, along with lower HSV loads in SCG
relative to TG. Interesting ly, CRISPR/Cas9, while having
very high activity in vi tro (> 50% gene edi ting of latent
HSV), showed little efficacy in vivo (gene edit ing < 1%).
This lab ascribed this to the large size of the Cas9 coding
sequence, which is close to the packaging limits of AAV and
thus limits available optimizations; this contrasts with the very
small meganucleases, which can be packaged into more effi-
ciently expressin g self-complemen tary variants of AAV.
These results support continued efforts towards gene editing
as an anti-HSV strategy, emphasize the importance of efficient
delivery for in vivo gene editing applications, and should en-
courage workers in the field to appreciate the full diversity of
targeted nucleases available beyond simply CRISPR/Cas9.
All animal studies were performed following guidelines and
protocols approved by the Institutional Animal Care and Use
Committee of the Fred Hutchinson Cancer Research Center
(protocol number 1865), Assurance #A3226-01. No human
studies were performed

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MikeHerp

I just read how that Army Vet raised $20 million for Trump's Wall idea.

Don't mean to get political here, but if he raised $20 million for a wall, surely it would be possible to raise a million for herpes cure research, since herpes directly affects so many people.  

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Miss Horne
6 hours ago, MikeHerp said:

I just read how that Army Vet raised $20 million for Trump's Wall idea.

Don't mean to get political here, but if he raised $20 million for a wall, surely it would be possible to raise a million for herpes cure research, since herpes directly affects so many people.  

This is a tough one, I’m going to call it as it is with my post here and it might upset a few people but that really isn’t my intention. 

If I’ve got this right so far only 37 people have donated towards the Fred Hutch appeal although approximately 250 log onto the site each day. Your choice if you want to donate or not but I think that it might be a case of people log on here, complain far too much about their condition but then don’t put “their money where their mouths are”. Sorry if this upsets people but that’s how I see things.

I think we need a “herpes spokesperson”, someone who is willing to put themselves out there on social media, takes a donation page forward perhaps and puts the wheels in motion. But let’s face it, nobody is going to volunteer for this task, it’s something that I won’t do myself so I can’t ask anyone else to do it for me. Sad but true, it seems we are too afraid to fight this battle, me included.

I have decided to deactivate my account as of today, this forum unfortunately depresses me too much and I am overwhelmed with the daily sadness I see here. Over the past couple of weeks I have received a number of messages from people on this forum saying that I’ve made them laugh or brightened their day, I hope I was some comfort to you. I’ve also felt a connection with some of you on this forum, in particular @MikeHerp and @Cas9 so thank you :thumbsup:

We all want better treatments, ultimately a cure and none of us want to suffer anymore but honestly I don’t know what the answer is, I wish I did. Wishing you all the best and all of my love.

Miss Horne :heart:

Edited by Miss Horne

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Rockster

Over 7000usd now, nice!

 

8aKRBVR.jpg

 

 


https://www.who.int/news-room/fact-sheets/detail/herpes-simplex-virus
An estimated 3.7 billion people under age 50 (67%) have HSV-1 infection globally.
An estimated 417 million people aged 15-49 (11%) worldwide have HSV-2 infection.

https://www.who.int/reproductivehealth/topics/rtis/hsv-1/en/
Taken together, these estimates suggest that over half a billion people between 15-49 years of age have a genital infection due either to HSV-1 or HSV-2.

-> so if all the people with Genital herpes gave 1 dollar, that would be 500million dollars. 

 

I guess if one would ask people who got an outbreak what they would pay for a cure, they would say 'thousands of dollars'. 

 

Ice Bucket Challenge raised 220 million dollars. (https://www.businessinsider.com/your-220-million-to-the-als-bucket-challenge-made-a-difference-2015-8?IR=T)

 

I guess the biggest 'hope' is that some super-rich people get herpes. They can donate anonymously. 
Barbara Streisand got her dog cloned for 50 000 usd. Johnny Depp spends 30 000 usd per month on wine? 

From what i have read - eg WHO worries about hpv 2, because it raises the risk of getting hiv a bit. That is the reason? HIV seems easy, just use a condom. (? Am i missing something). Herpes sucks because there is no way to prevent it when having sex. 

 

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blurneworder
6 hours ago, Miss Horne said:

This is a tough one, I’m going to call it as it is with my post here and it might upset a few people but that really isn’t my intention. 

If I’ve got this right so far only 37 people have donated towards the Fred Hutch appeal although approximately 250 log onto the site each day. Your choice if you want to donate or not but I think that it might be a case of people log on here, complain far too much about their condition but then don’t put “their money where their mouths are”. Sorry if this upsets people but that’s how I see things.

I think we need a “herpes spokesperson”, someone who is willing to put themselves out there on social media, takes a donation page forward perhaps and puts the wheels in motion. But let’s face it, nobody is going to volunteer for this task, it’s something that I won’t do myself so I can’t ask anyone else to do it for me. Sad but true, it seems we are too afraid to fight this battle, me included.

I have decided to deactivate my account as of today, this forum unfortunately depresses me too much and I am overwhelmed with the daily sadness I see here. Over the past couple of weeks I have received a number of messages from people on this forum saying that I’ve made them laugh or brightened their day, I hope I was some comfort to you. I’ve also felt a connection with some of you on this forum, in particular @MikeHerp and @Cas9 so thank you :thumbsup:

We all want better treatments, ultimately a cure and none of us want to suffer anymore but honestly I don’t know what the answer is, I wish I did. Wishing you all the best and all of my love.

Miss Horne :heart:

No, stay!

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Pokemon
6 hours ago, Miss Horne said:

approximately 250 log onto the site each day

Not everyone who logs on will read this topic and some will be hesitant to donate for a number of reasons.

In my view, you don't need super-rich benefactors (although that would certainly help). What we need is for enough interest and subsequent action.

Are there any marketing experts in the group - people who can effectively use social media, or do we know any who could help? I see Gofundme and other types of fundraisers generating tons of interest.

Wish you would stay, though, Miss Horne.....

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Pokemon

Is it possible for the Admins to email all members about the Fred Hutch work and call for donations?

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Cas9
1 hour ago, Pokemon said:

Is it possible for the Admins to email all members about the Fred Hutch work and call for donations?

Absolutely not

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Pokemon
3 hours ago, Cas9 said:

Absolutely not

Social marketing it is, then,,,,. Any ideas anybody?

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MikeHerp

I've been blasting it on social media.  Particularly Twitter.  But I've also noticed it some people are talking about it on Facebook.

The admins/mods here have been nice enough to pin this fund raiser and that is very helpful.

It would be very helpful if, even if you don't want to donate, help us getting the word out.

If you want to do it anonymously, make a Reddit, Twitter or Facebook account etc. and start posting about it.

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Pokemon

I would think that what you need is a platform that can reach millions, if possible. Starting a Facebook or Twitter account without a mass following won't do it. We need to involve a social media influencer - someone with huge following.

I'm not a fan, but what about contacting somebody like Kim Kardashian?

 

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Pokemon
58 minutes ago, MikeHerp said:

The admins/mods here have been nice enough to pin this fund raiser

Where? I can't find it on the home page - do you mean the star next to the topic name?

 

Edited by Pokemon
Clarity

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dont quit!17
On 1/11/2019 at 8:33 AM, Pokemon said:

Hmm. I personally do not know for a fact that Usher or any of these people has the disease. I would be cautious in my approach.

I believe there is court documents proving so but it's just an idea since someone brought up celebrities. 

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MikeHerp

Hey guys.  Honeycomb was down for a while, and I think that contributed to the slowdown in donations.

But a few dollars still trickled in.

We are at $7215 now. 

I'm planning to donate again if we can reach $10,000, which I think we will.

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StayingUpbeat

@MikeHerp , it looks like the Fred Hutch Institute sponsored trial on HSV-529 wrapped up on January 14th.  Since we've got a (small) in it might be worth asking what they are thinking as far as timeline for presenting results.

https://clinicaltrials.gov/ct2/show/NCT02571166?term=HSV-529&amp;cond=Herpes+Simplex&amp;rank=1

 

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MikeHerp

 

2 hours ago, StayingUpbeat said:

@MikeHerp , it looks like the Fred Hutch Institute sponsored trial on HSV-529 wrapped up on January 14th.  Since we've got a (small) in it might be worth asking what they are thinking as far as timeline for presenting results.

https://clinicaltrials.gov/ct2/show/NCT02571166?term=HSV-529&amp;cond=Herpes+Simplex&amp;rank=1

 

Hello StayingUpbeat,

I had forgotten about that other HSV-529 trial. It's interesting FH is also involved with that.  I'm curious about it as well (though I have low expectations).

The only problem is that I'm only in touch with Fred Hutch's philanthropy manager.  I can't say that I'm communicating with FH at any deeper level.

I don't know whether she is aware of this small vaccine trial.

Do you think it would be apprporiate to ask her about this?  Please let me know your opinion.

We are raising money for them, even if the amount so far is, on the scale of NIH grants, modest.  But we could ask for a little quid pro quo about info in return.

Lauren (the manager) reached out to me a few days ago to ask if I have any other problems or comments on the fund raiser, so I could potentially ask her about your question when I reply to her.  My only reply was going to be that, once we exceed $10k, to please raise the target to $20k.  And second, to remove the reference to "personal fund raiser" to "herpes simplex treatment research fund raiser" or something similar.

Anyway, pls let me know your thoughts.

Thanks again for you and other mods/admins to agree to pin this thread.  That has definitely helped raise awareness about the fund raiser and that has helped to raise funds.

Cheers ~

PS - what did you mean by "Since we've got a (small) in it"? 

Edited by MikeHerp

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