Jump to content
World's Largest Herpes Support Group
MikeHerp

Donations to Fred Hutch Center

Recommended Posts

hk81

Thanks for the detailed answer.

5-10k dollars is much more affordable and it makes this approach more interesting; so hopefully it will succeed in getting to the market (before I get mad for the symptoms in my eyes :( ).

Probably in the US health insurances give a better coverage of sexual related diseases. That's not the case in Europe, where I had to pay for HPV vaccine (being out of the recognized age range) as well as HSV tests.

But anyway it wouldn't make a big problem to invest those money

Share this post


Link to post
Share on other sites
Hopeful heart
4 hours ago, MikeHerp said:

BTW, somebody made a sizeable donation to the fund raiser today.  Around $2.5k.

Anyone know who it was? 

No idea, but thank you! 

I wish there was a way to bring in some more money.  I've been looking at how much money some of these grants award.  There were several Albert Einstein (x-vax vaccine now) grants and they were about 700K as far as what I can see on the internet.  Sometimes the grant info doesn't tell you how much money they got, but I can see some of Jerome's money.  In any case, if 68k people gave 10 dollars then with 680k we could really help Jerome.  I know not everyone on this site is active, some people just come here to ask questions... I've already donated.  I know every bit counts because it can mean the difference in having enough animals for experiments, etc.

Share this post


Link to post
Share on other sites
T9000
19 hours ago, MikeHerp said:

See my comments above.  The causative link to HIV is well accepted.  A number of studies have shown that around 40% to 60% of HI?V infections are as a result of HSVHSV is a major driver of the HIV epidemic.  Getting rid of it, would greatly decrease HIV prevalence and infections.  HIV is the big one.  But there are other problems, like ocular HSV that and neonatal HSV, that, aren't common, but still add to the disease burden.  Further research is being done on the Alzheimers connection as well as other possible issues. "HSV is largely harmless" is not really the mainstream view among serious researchers of it anymore.  

Yeah but the real question is is that mindset going to trickle down to medical providers and disease policy makers? Unfortunately I don't think anytime soon, because in the US, we now have a way to prevent acquisition of HIV, HSV positive or not. I've always suspected that HSV/HIV connection was more of an issue in Africa, where perhaps you have less use of antivirals and condoms, and there's so many more people contracting it, so maybe it's easier to study.

I think the main reason the medical community ignores/denies herpes and it's complications is because it's a terrible(but overwhelmingly not deadly)problem without a solution. So it's easiest for them to simply ignore it. I'm come to the conclusion that doctors really don't care about quality of life much at all. Their primary concern is keeping people alive. If they can prevent you from suffering that's good, but if not, oh well. However I think if a solution was made available, then perhaps suddenly herpes risks and complications would be paid attention to, and maybe herpes could get some of that hysteria that bacterial infections get (which we all would have killed to have gotten instead of herpes, funny how that works).

Share this post


Link to post
Share on other sites
T9000
19 hours ago, MikeHerp said:

BTW, somebody made a sizeable donation to the fund raiser today.  Around $2.5k.

Anyone know who it was?  

Interesting and very good news. Have you by chance shared the fundraiser with any new communities/platforms lately? That might explain it. Definitely someone with some disposable income.

Share this post


Link to post
Share on other sites
MikeHerp
6 hours ago, T9000 said:

Yeah but the real question is is that mindset going to trickle down to medical providers and disease policy makers? Unfortunately I don't think anytime soon, because in the US, we now have a way to prevent acquisition of HIV, HSV positive or not. I've always suspected that HSV/HIV connection was more of an issue in Africa, where perhaps you have less use of antivirals and condoms, and there's so many more people contracting it, so maybe it's easier to study.

I think the main reason the medical community ignores/denies herpes and it's complications is because it's a terrible(but overwhelmingly not deadly)problem without a solution. So it's easiest for them to simply ignore it. I'm come to the conclusion that doctors really don't care about quality of life much at all. Their primary concern is keeping people alive. If they can prevent you from suffering that's good, but if not, oh well. However I think if a solution was made available, then perhaps suddenly herpes risks and complications would be paid attention to, and maybe herpes could get some of that hysteria that bacterial infections get (which we all would have killed to have gotten instead of herpes, funny how that works).

I think that view is too pessimistic, though I share your frustration about the pace. 

First, although there is a way to prevent HIV, it’s not perfect. Only sone people take it, others don’t know if their status We’ve made big strides in HIV but there’s still far to go. Many don’t know if their HSV2 status, but they may still suffer from subclinucal inflammation that encourages HIV transmisdion

Health professionals are aware of the link.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700807/

This research systematic review and meta-analysis from 2017, funded by WHO and published in renowned journal Lancet, states as follows:

“Interpretation

We found evidence that HSV-2 infection increases the risk of HIV acquisition. This finding has important implications for management of individuals diagnosed with HSV-2 infection, particularly for those who are newly infected. Interventions targeting HSV-2, such as new HSV vaccines, have the potential for additional benefit against HIV, which could be particularly powerful in regions with a high incidence of co-infection.”

So medical professionals are aware of the link and there is an interest in it. While it takes time to change attitudes, I think they are changing.

And this issue is not limited to developing countries. This is a study of non-injecting drug users in NY City:

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0087993

“The estimated PAR%s indicate that approximately half of HIV acquisition among females was caused by HSV-2 infection and approximately 60% of HIV transmission from females was due to HSV-2 co-infection.

Conclusions

The increase in HIV infection among these non-injecting drug users is better considered as an increase in HSV-2/HIV co-infection rather than simply an increase in HIV prevalence. Additional interventions (such as treatment as prevention and suppressing the effects of HSV-2 on HIV transmission) are needed to reduce further HIV transmission from HSV-2/HIV co-infected non-injecting drug users.”

So I think this is on the radar.

 

 

 

 

 

Share this post


Link to post
Share on other sites
MikeHerp

I kind of agree though that quality of life issues seem to be deemphasized in the Jedi always community. And that’s a problem for people with HSV. It’s a problem even in the HSV community. Like in the herpes Subreddit where people point out that symptomatic infections are “rare” in response to people who are having difficulty with symptoms.

Share this post


Link to post
Share on other sites
T9000
13 hours ago, MikeHerp said:

I kind of agree though that quality of life issues seem to be deemphasized in the Jedi always community. And that’s a problem for people with HSV. It’s a problem even in the HSV community. Like in the herpes Subreddit where people point out that symptomatic infections are “rare” in response to people who are having difficulty with symptoms.

Yes it's a huge problem and it's ridiculous. The difference i think is that doctors and public health officers have the power to change the status quo, whereas it's much harder for us. I wonder if it ends up being confirmed that herpes accelerates alzheimers progression how they will respond to that. Perhaps they will still try and resist doing blood screenings? Maybe only amomg older folks would be my guess.

Share this post


Link to post
Share on other sites
T9000
On 8/9/2019 at 8:25 AM, Hopeful heart said:

No idea, but thank you! 

I wish there was a way to bring in some more money.  I've been looking at how much money some of these grants award.  There were several Albert Einstein (x-vax vaccine now) grants and they were about 700K as far as what I can see on the internet.  Sometimes the grant info doesn't tell you how much money they got, but I can see some of Jerome's money.  In any case, if 68k people gave 10 dollars then with 680k we could really help Jerome.  I know not everyone on this site is active, some people just come here to ask questions... I've already donated.  I know every bit counts because it can mean the difference in having enough animals for experiments, etc.

Isn't the grant calculated to more or less cover the project expenses entirely though? That's something I've been curious about. I wonder how much the fundraiser actually helps since the research is already funded. I guess it's possible that the project will branch out more though. It would be nice to able to fund some research that isn't already funded as well.

Share this post


Link to post
Share on other sites
MikeHerp
7 hours ago, T9000 said:

Isn't the grant calculated to more or less cover the project expenses entirely though? That's something I've been curious about. I wonder how much the fundraiser actually helps since the research is already funded. I guess it's possible that the project will branch out more though. It would be nice to able to fund some research that isn't already funded as well.

I’m going to raise this question at my next communication with their philanthropy team. Seems like a fair question,

Share this post


Link to post
Share on other sites
Hopeful heart
9 hours ago, T9000 said:

Isn't the grant calculated to more or less cover the project expenses entirely though? That's something I've been curious about. I wonder how much the fundraiser actually helps since the research is already funded. I guess it's possible that the project will branch out more though. It would be nice to able to fund some research that isn't already funded as well.

 

https://www.insidephilanthropy.com/health-philanthropy/medical-research.html

https://ssir.org/articles/entry/driving_medical_research_through_major_giving

https://www.philanthropy.com/article/When-Scientific-Research/151777

 

A few interesting reads here.  I would not sit back and think that the NIH doing enough. In order to even get the money for the grant, there is an application process with a lot red tape and waiting. What we have been accomplishing here is great, but more money would speed up the process. 

Perhaps with more money, work with HSV-2 could be done in parallel or more scientists could be hired to work on improving the vectors.    

 

 

Share this post


Link to post
Share on other sites
T9000
9 hours ago, Hopeful heart said:

 

https://www.insidephilanthropy.com/health-philanthropy/medical-research.html

https://ssir.org/articles/entry/driving_medical_research_through_major_giving

https://www.philanthropy.com/article/When-Scientific-Research/151777

 

A few interesting reads here.  I would not sit back and think that the NIH doing enough. In order to even get the money for the grant, there is an application process with a lot red tape and waiting. What we have been accomplishing here is great, but more money would speed up the process. 

Perhaps with more money, work with HSV-2 could be done in parallel or more scientists could be hired to work on improving the vectors.    

 

 

Okay thank you for the links!

Share this post


Link to post
Share on other sites
MikeHerp

Fund raiser is over $29,000 now, after a big donation this past week.

Great job guys.  

Share this post


Link to post
Share on other sites
MikeHerp
Posted (edited)

@T9000 this is from 2015.  It was produced by/for the WHO.  https://www.who.int/immunization/research/meetings_workshops/18_HSV.pdf?ua=1

If you read through this, I think you can get the idea that, at least the WHO is taking HSV pretty seriously.

Now, it's true also that, many of the vaccine candidate efforts cited in the presentation ultimately failed since then--though that's not really the WHO's fault. 

But the arguments for the need for an HSV vaccine remain.  I believe that we are simply in a short lull caused by several vaccine failures, that is otherwise a golden era of HSV knowledge and focus

If you look at the last 40-50 years, it does look pretty hopeless.  But if you focus in particular on the last 10 to 15 years, it looks much better.  Particularly after the HSV-HIV link was confirmed and its consequences were fully understood, there has been new attention to this and many different vaccines and one new molecule agent, have been tested, all of which are advancing the field (mainly by failures, but still advancing it anyway).

And with the recent breakthroughs in the FHC gene editing research, the pritelivir phase 2 results out early next year (note: pritelivir could be approved based on phase 2 b/c of its fast-track status, though availability could still be an issue), and the recent news of X-Vax getting funding, I think this recent "lull" is quickly passing, and we are about to go into a new wave of trials and activity.

I believe in what Keith Jerome mentioned at the end of the 2016 presser:

"““When we first started this work and looked for funding, some [grant proposal] reviewers said, ‘Herpes is just a nuisance infection. Why would anybody want to be cured?’” Jerome said.......

One of the really cool things over the years has been the shift in perceptions around cures of chronic viral infections generally, but particularly herpes infections,” Jerome said. “The scientific community is really coming around and accepting this as an important kind of research and as something that has a good chance of bearing fruit, hopefully soon.” 

Edited by MikeHerp

Share this post


Link to post
Share on other sites
MiLoBeng
Posted (edited)
11 minutes ago, MikeHerp said:

@T9000 this is from 2015.  It was produced by/for the WHO.  https://www.who.int/immunization/research/meetings_workshops/18_HSV.pdf?ua=1

If you read through this, I think you can get the idea that, at least the WHO is taking HSV pretty seriously.

Now, it's true also that, many of the vaccine candidate efforts cited in the presentation ultimately failed since then--though that's not really the WHO's fault. 

But the arguments for the need for an HSV vaccine remain.  I believe that we are simply in a null, that is otherwise a golden era of HSV knowledge and focus.

If you look at the last 40-50 years, it does look pretty hopeless.  But if you focus in particular on the last 10 to 15 years, it looks much better.  Particularly after the HSV-HIV link was confirmed and its consequences were fully understood, there has been new attention to this and many different vaccines and one new molecule agent, have been tested, all of which are advancing the field (mainly by failures, but still advancing it anyway).

I believe in what Keith Jerome mentioned at the end of the 2016 presser:

"““When we first started this work and looked for funding, some [grant proposal] reviewers said, ‘Herpes is just a nuisance infection. Why would anybody want to be cured?’” Jerome said.......

One of the really cool things over the years has been the shift in perceptions around cures of chronic viral infections generally, but particularly herpes infections,” Jerome said. “The scientific community is really coming around and accepting this as an important kind of research and as something that has a good chance of bearing fruit, hopefully soon.” 

Even if they dont have the cure in our lifetime. I do hope they have it in the future so that next generation wont have to suffer like we did. 

Edited by MiLoBeng

Share this post


Link to post
Share on other sites
T9000
16 hours ago, MikeHerp said:

@T9000 this is from 2015.  It was produced by/for the WHO.  https://www.who.int/immunization/research/meetings_workshops/18_HSV.pdf?ua=1

If you read through this, I think you can get the idea that, at least the WHO is taking HSV pretty seriously.

Now, it's true also that, many of the vaccine candidate efforts cited in the presentation ultimately failed since then--though that's not really the WHO's fault. 

But the arguments for the need for an HSV vaccine remain.  I believe that we are simply in a short lull caused by several vaccine failures, that is otherwise a golden era of HSV knowledge and focus

If you look at the last 40-50 years, it does look pretty hopeless.  But if you focus in particular on the last 10 to 15 years, it looks much better.  Particularly after the HSV-HIV link was confirmed and its consequences were fully understood, there has been new attention to this and many different vaccines and one new molecule agent, have been tested, all of which are advancing the field (mainly by failures, but still advancing it anyway).

And with the recent breakthroughs in the FHC gene editing research, the pritelivir phase 2 results out early next year (note: pritelivir could be approved based on phase 2 b/c of its fast-track status, though availability could still be an issue), and the recent news of X-Vax getting funding, I think this recent "lull" is quickly passing, and we are about to go into a new wave of trials and activity.

I believe in what Keith Jerome mentioned at the end of the 2016 presser:

"““When we first started this work and looked for funding, some [grant proposal] reviewers said, ‘Herpes is just a nuisance infection. Why would anybody want to be cured?’” Jerome said.......

One of the really cool things over the years has been the shift in perceptions around cures of chronic viral infections generally, but particularly herpes infections,” Jerome said. “The scientific community is really coming around and accepting this as an important kind of research and as something that has a good chance of bearing fruit, hopefully soon.” 

Yes I have seen this but thank you. The WHO do seem to be the only ones who really take herpes seriously. Hopefully there will be a trickle-down effect.

Share this post


Link to post
Share on other sites
MikeHerp

Hey FHC HSV Cure Research Fund Raisers!

Got the following updates from FHC's philanthropy manager:

The below is their response to my question about the status and whether there are any updates.    In summary, the upcoming update will likely be a peer reviewed paper about Dr. Jerome's progress.  In that sense, the update might not contain a ton of new information, as it will likely reflect the video that we have already seen.  However, I'm sure there will be a lot of interesting details that we didn't know and there may be some new information as well, depending on when they started writing the paper.  More generally, a peer reviewed paper will be another important milestone in the progress of this research--having peer reviewed publications documenting your progress is an essential step to eventually both get commercial funding and getting regulatory approval for human trials.  While the video we watched was awesome, it's just that--a video presentation.  Further, as she noted, the promotion of the fund raiser with the help of famed herpes blogger Emily, is still very much planned.

____________________________________________________________________________________________

Hi Mike,

It’s great to hear from you! I hope your summer has been wonderful as well. I am headed out on vacation next week, actually. 😊

I’ve been tracking the activity on the page and saw a recent gift of $2,500! Nice job!

I’m glad that the video has gotten some traction – the work presented there is exactly what Dr. Jerome’s paper is about. Feel free to share it. We are just waiting for peer review and journal publishing, which always takes longer than we would like it to. Our Communications team is ready to execute promotions with Emily as soon as we get the green light, and I can assure you that you will be the first person I notify! Are there any questions you have, or from the group, that I can answer in the meantime?

You guys are really hitting it out of the park with your efforts, and we can’t thank you enough!

________________________________________________________________________________________

Now the below is their response to my follow up question posed by @T9000 about why this fund raiser is helpful and whether the funds can really be useful for the research.  Keeping in mind that this was a fund raiser which was started in response to our community's request, I think this is a solid response and I definitely intend to keep giving. Ideally, our fund raising efforts would exceed the NIH grant.

_______________________________________________________________________________________________

Hi Mike,

That is a great question. Dr. Jerome does indeed have a grant to perform research from the NIH. However, it is my job to find private contributions such as yours that can:

a) fill in the gaps to provide additional support needed (for example, hiring an extra lab technician not covered by the grant)

b) allow Dr. Jerome the freedom to explore additional ideas/innovation that is more experimental (meaning, not funded by the grant)

c) allow Dr. Jerome to develop “proof of concept” from his ideas, which he would use to apply for additional NIH funding (which circles back to your example of it being difficult to find funding in the past). Big government funders don’t always support early research, but once they see good data, they often get really interested, which means private dollars can spark tens of millions in funding.

In a nutshell, private support jump-starts projects 6X faster than federal grants alone, and is a very valuable tool for our scientists! I can also assure you that everything raised through your fundraiser is going straight to Dr. Jerome’s lab for him to spend on the above as him team sees fit.

I’m happy to answer any other questions – feel free to share my information with the group.

_______________________________________________________________________________________________

 

In summary, they are continuing to progress the research and the publication of the peer reviewed article, will be another important milestone towards the goal of an HSV cure. 

Further, their philanthropy team sets forth some compelling reasons why our continuing financial support of this research is important.  The fund raising may get a further boost once HSVblogger Emily is engaged to promote the cause. 

In the meantime, keep it going guys! 

Edited by MikeHerp

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.




  • Donate

    If Honeycomb has helped you, please help us by making a donation so we can provide you with even better features and services.

  • The Hive is Thriving!

    • Total Topics
      70,309
    • Total Posts
      475,370
  • 0_unsure-if-it-is-herpes.png

    Unsure if you have an STD?
    Get started with testing options here

  • Posts

    • alextheman
      You have to lower your stress.Stress is a big key.Me im trying to sleep more and lower my stress.Im trying to not worry about having herpes.I have it,and there is nothing i can do,So why stress myself about it?Im taking medicine to help suppress it.For me stress and sleep are my biggest factors.
    • nakedandafraid
      How long after you had sex with this woman did you exhibit symptoms? What makes you think she has herpes?
    • hobson
      Hi she got the cold sore a couple days ago after oral . Always use a condom. She isn’t got herpes as far as I’m aware but she got a cold after she performed oral on me . She sent me a pic of the cold sores.  I don’t know why they didn’t do blood tests. I have read a PCR test is accurate. I don’t know how to get closure from this. 
    • nakedandafraid
      Im no admin, but ive seen many folks share photos looking for info. I think its ok.  If I may ask, how long after having sex with this woman did the symptoms appear?  Ive heard that pc swabs are pretty accurate.. Did this woman tell you she has herpes, or did you hear it through a third party?  I dont see why they wouldnt give you the iGg / iGm blood test. If im not mistaken, you can order one yourself and go to a local Quest/Labcorp (depending on where you live)  i assume the cold sores are on her mouth? Did you see them, or did she tell you about them?   
    • WilsoInAus
      Hey @K1009 that all sounds a typical experience of transmission between partners. Please take heart, after the first few months, many people experience extremely few outbreaks of any with gHSV-1. Also you cannot feasibly give this back to your partner, you are now concordant sexually in terms of HSV and your immune systems will protect you from further infection.
×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.