Jump to content
World's Largest Herpes Support Group
MikeHerp

Donations to Fred Hutch Center

Recommended Posts

GotMeAtLast
31 minutes ago, Miss Horne said:

Some of the comments on the FHC link doesn’t help our cause. 

Doesn’t take a genius to work out that someone from this community posted that message. 

This is unfortunate and doesn’t benefit anyone in the long run. 

For some reason I do not see the comments section on the FHC page. Can you post the link to the comments please?

Share this post


Link to post
Share on other sites
Freefalling87

Looks like it increased to $20k!

Share this post


Link to post
Share on other sites
MikeHerp

Hey Guys,

I got the below message from Andrea, FHC's philanthropy manager.  The target was upped to $20k so that's good.  

Regarding 1, it's no big deal.  I was just hoping that the fund raiser would be a bit clearer, but on this one, no can do.  No problem.

Regarding 2, some ppl here expressed some concern that they got messages thanking them for their donations to "cancer" research. However, it is pretty clear that these are just automated messages.  Andrea has given some suggestions about what she can do to reassure everyone that their donation really did go to HSV.  If you guys really want her to send you all an additional private message or if you would like her to write a memo to the whole support group, she can do that.  Pls let me know if you would like either of these.  My personal opinion, is that what she wrote below is already sufficient reassurance that your donations are really going to HSV cure research.  But that's just my thought.  If anyone feel strongly about getting additional personal e-mails or a groupwide memo, pls let me know, and I'll communicate that if there is sufficient interest in that.  

I think the big one in her reply is point 3.  She will try to work with Dr. Jerome to get updates in the future--stressing that this will require some time.  My thought is to respond thank you, updates would be appreciated, but there is no hurry and just when there is something significant to update.  We're not looking for weekly or monthly updates (or daily updates what color labcoat he is wearing), just some idea every now and then what's going on.  Honestly, one or two updates a year would be fine with me.  I say this because, we are trying to help FHC, not create additional work for them that will take away resources and attention.  that's my thought. 

[PS: @StayingUpbeat I've been keeping in mind your comments on HSV-529, in which FHC was involved investigating.  I think her reply below, might give us some window to also ask about that at some point.  Though I understand they were an investigator not the sponsor, so they might not know or feel it's appropriate to say what decision will be made about it.  But still, I think in a little while, we could also mention it if they can share anything.]

Pls give me your comments on all points (I probably can't reflect every single person's comment, I'll more likely reply on a group-wide consensus basis).

Thanks.  

 

----- Forwarded Message -----
From: Larson, Andrea M <amlarson@fredhutch.org>
To: Mike
Sent: Tuesday, February 12, 2019, 7:39:40 AM GMT+9
Subject: RE: suggestion about donations to Fred Hutch
 

Hi Mike,

 

It’s so great to hear from you! That’s wonderful that you have reached your goal and would like to increase it. I have made that change for you. The answers to your additional questions are below:

 

  1. We unfortunately cannot change the title “Personal Fundraiser”, because this is what all of these donation forms are called (we have many folks who fundraise for specific research types for special occasions or in honor of someone).
  2. You are correct that the content of the messages that your donors receive reflects our largest research focus, which is cancer. I cannot change the language of these messages, however, I may be able to send an additional thank you email that confirms that the donations are going to Dr. Jerome’s HSV research to each donor, or I can write a special memo for the support group – do you think either of those options would help?
  3. I would love to work with Dr. Jerome and his lab colleagues to get your group updates on his research! Please allow me some time to work with his team to determine what may be feasible.

 

Thanks again for your partnership – I enjoy working with you and your community!

 

Best,

Andrea

 

Andrea MacPherson Larson
Annual Giving Manager
Philanthropy
206.667.5242 Office

206.795.0890 Mobile
amlarson@fredhutch.org 


http://www.fredhutch.org/content/dam/public/email-signatures/2/fred_hutch_logo.png
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N., Mail Stop J5-200
Seattle, WA 98109

fredhutch.org

 

From: Mike
Sent: Sunday, February 10, 2019 2:12 AM
To: Larson, Andrea M <amlarson@fredhutch.org>
Subject: Re: suggestion about donations to Fred Hutch

 

 

Dear Andrea,

 

How are you doing?  

 

Thank you for your e-mail below.  I didn't immediately respond because there was nothing further to do at the time that you kindly wrote.

 

We have been continuing the fund raiser, which has enjoyed tremendous support in the herpes community and related stakeholders.  The fund raiser has been highlighted and featured on Honeycomb.click, which is the world's largest herpes community support group, which has facilitated in raising funds for the cause, with many of the community's members donating.

 

As a result, I'm pleased to note that we have achieved the next milestone you have set: $10,000 in funds raised, all in just a few weeks.  Accordingly, when you get a chance this coming week, would you please kindly raise the target from $10,000 to $20,000?  I think we are ready for the next target.  At least some members have set up monthly donations ensuring that money will continue to trickle in.

 

I'm personally going to contribute another $500 this week to speed us on the way towards the next goal.

 

Meanwhile, in addition to raising the target, we wonder whether you might also consider the following.

 

1.  The fund raiser is currently titled "Personal Fundraiser".  Might it be possible to change the title to "Herpes Cure Fundraiser"?  (If not possible, it's no problem).

 

2. Our community members who have contributed to this fund raiser, generally receive messages from Fred Hutch with content along the lines of "thank you for your contribution to cancer research".  This has left some donors a bit anxious whether their money is really going towards herpes cure research.  I presume that these are automated messages that reflect Fred Hutch's traditional role of focusing on cancer.  But if there is any way to change that, that would be good.  Alternatively, your kind e-mailed reassurance that, despite such automated messages, the funds raised through this fund raiser are really going to herpes cure research conducted by Dr. Keith Jerome and his team, should also suffice.

 

As a final thought, in the future, it would be great to read about any further progress about the research efforts.  Fred Hutch published a really great piece in 2016 (Can gene editing cure herpes?) about the efforts going on at Jerome Lab and we've all read Dr. Jerome's peer reviewed research papers on the same.  These publications have have helped to bring this important research to the attention of many of our community's members--which has in turn certainly been helpful with raising funds as well.  

Nobody in the community is expecting any promises or quick break throughs.  In fact, considering the many past failures in this field, expectations are fairly low.  However, we'd like to make this a long term partnership and, in that regard, any updates from Jerome Lab, in any form, would certainly be appreciated and would likely help with the fund raising.  

 

The above are just suggestions.  On behalf of the community, I'd really like to thank you again for working with us.  It's been a lot of fun and we intend to keep the ball rolling.

 

Kind regards.

 

Mike

Share this post


Link to post
Share on other sites
Lost-hope

I agree with Point 3. That  we shouldn’t expect any regularly updates. But hope we will get a newsletter or insight as to what’s new or how the donations will be use mainly 

20k won’t be easy but let’s show FHC that there is a silent community in support of there research 

Share this post


Link to post
Share on other sites
oneday

Reading through this thread reminds me of the DRACO fundraiser, does anyone remember that from a few years ago? Would love to know where our money went because that amounted to nothing..

At least Dr Jerome has some reputable research behind him. I don't see it going down the DRACO route at all.

Edited by oneday

Share this post


Link to post
Share on other sites
oneday

About 66 donations averaging $150 per donation (some more, some less of course)

That's a great effort but we could surely get 100 people still on here to donate whatever they can!! It's so important there's momentum going on this and we need to keep it that way

Share this post


Link to post
Share on other sites
Trace67
4 minutes ago, oneday said:

Reading through this thread reminds me of the DRACO fundraiser, does anyone remember that from a few years ago? Would love to know where our money went because that amounted to nothing..

At least Dr Jerome has some reputable research behind him. I don't see it going down the DRACO route at all.

That's just it. You never know where these things will go. People donated to SIU on behalf of Halford and swore that it would be the shit, but you see how that went. They screamed like mad cows if anything slightly negative was said about it much like here. Having said that, I don't believe this is a blatant rip off, but I said the same thing about other funds and they all ended up being disappointments. A cure will come when a cure comes. I bet they cant get 20K, but please prove me wrong on that.

Share this post


Link to post
Share on other sites
fugazi1

Hey guys, this is great that they have increased the target and I will definitely donate again. However, I can’t help but wonder how far exactly is 20k going to go? Doesn’t this type or research cost hundreds of thousands...if not millions? Or am  I misunderstanding this particular situation. Could somebody please shed some light? Thank you.

Share this post


Link to post
Share on other sites
oneday

@fugazi1 I think the aim at this stage is to hit one milestone at a time. First it was 5K, that was reached. We hit 10K!! Now 20K :D Who knows how far we can get with this. Let's remain optimistic that our contribution will help them with proof of concept which will open doors for other investors. 

Share this post


Link to post
Share on other sites
Trace67
47 minutes ago, fugazi1 said:

Hey guys, this is great that they have increased the target and I will definitely donate again. However, I can’t help but wonder how far exactly is 20k going to go? Doesn’t this type or research cost hundreds of thousands...if not millions? Or am  I misunderstanding this particular situation. Could somebody please shed some light? Thank you.

Yes, you're correct. They can burn 20k in days. They will need never ending funds from big sources to continue. Not saying it wont help in some small way but dont be under the illusion that it will bring you a cure any faster if at all. If you want to donate knowing these facts then thats totally cool.

Share this post


Link to post
Share on other sites
MikeHerp
59 minutes ago, fugazi1 said:

Hey guys, this is great that they have increased the target and I will definitely donate again. However, I can’t help but wonder how far exactly is 20k going to go? Doesn’t this type or research cost hundreds of thousands...if not millions? Or am  I misunderstanding this particular situation. Could somebody please shed some light? Thank you.

It's a legit question. 

There's some general info about it here.  https://www.fredhutch.org/en/about/accountability-and-impact/every-gift-counts.html

In particular, note the first bullet point:

"Support early, proof-of-concept studies our researchers can leverage into federal grants many times larger than the initial private investment."

You're correct of course, that clinical trials, particularly phase 3, would require hundreds of millions of USD.  However, they aren't there yet.  At the moment, they are testing in animals and moving towards a larger scale animal trial.  The info relating to their last NIH grant (http://grantome.com/grant/NIH/R01-AI132599-01A1) states:

"This project is expected to demonstrate the feasibility of our therapeutic approach directed towards the elimination of HSV pathogenesis in vivo, and to provide critical information for the development of a larger scale animal study necessary to bring this new therapeutic approach to the clinic."

Bascially, the idea is, we are helping them fund pre-clinical research into this.  Keep in mind that, the 2016 grant for their HSV research from the NIH was only $260,000 (you can find his 2016 grant in the above link).  So our $10,000 raised, while it's still small, does help support this research in a tangible way.

We don't need to raise millions.  Once they show safety and efficacy in animals, which they are in progress of doing, large institutional investors will be drawn to it, and would likely fund into clinical trials.  Fred Hutch has spun off many basic research projects into clinical trials, and some of them have been commercialized (check on this by looking up Fred Hutch Center on wikipedia).

You may have heard of ExcisionBio, who are using CRISPR (first for HIV, but also tyargeting HSV).  They were able to secure $10 million of funding after showing in a peer reviewed paper, that they could edit HIV and HSV using CRISPR

We are trying to help position Dr. Jerome's team to get more NIH funding and possibly investor funding.  And for that, we don't need to raise millions.

The other goal of the fund raiser is to signal to relevant parties that there is interest in better treatments and a cure.  If many people are willing to chip in $50 or $100 to fund basic research, people will undertstand that there would be significant interest in paying for a cure.  By raising money, we are signaling that a potential cure or partial cure, could be a commercial success as well. There could be a market out there for what they are doing.  People would pay money for it.  It's not just a benign skin condition that nobody is really interested in improving.  That's what the fund raiser conveys. and communicates.

 

Edited by MikeHerp

Share this post


Link to post
Share on other sites
MikeHerp
9 minutes ago, Trace67 said:

Yes, you're correct. They can burn 20k in days. They will need never ending funds from big sources to continue. Not saying it wont help in some small way but dont be under the illusion that it will bring you a cure any faster if at all. If you want to donate knowing these facts then thats totally cool.

As usual, this is not really true.  The present research isn't dependent on big investors to continue at this stage.  They started this research with donations from private sources, then when the research showed some promise, they were able to secure NIH grants, even though the grants are modest ($260,000 in 2016).

This is all elegantly explained in the Fred Hutch press release in 2016. 

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

Quote

 

"Jerome started out studying the basic interactions between herpes and its host. Then about five years ago, he noticed the work that Fred Hutch structural biologist Dr. Barry Stoddard was doing on gene-targeted proteins for genetic engineering and “realized we could shift from just studying these viruses to actually doing something about them.”

His first challenge was just finding funding for herpes cure research.

“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.  

Through private donations from the Caladan Foundation and internal sources, Jerome kept the research going. The results he’s been able to show have now led to funding by the National Institutes of Health.

“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, eventually, this will need millions.  We don't hyave to worry about that.  If Dr. Jerome can continue to prove increasing efficiency and safety in the animal studies, this will definitely attract the attention of large institutional investors who have not just millions but billions to invest in break through technologies.

Remember, in 2016, they showed they were able to inactivate 2-4% of latewnt HSV in mice.  In May 2018, it appears they were able to increase their efficiency to nearly 20% to 30%, likely partially curing mice.  This is the first time that anyone was able to touch latent HSV in vivo.

I don't know whether they will ultimately be successful.  Nobody can.  But I do think that gene editing is here to stay.  Billions of dollars are being invested in gene editying technologies already--that's a fact, there are 3 companies with billions in market capital that are focused just on CRISPR.  It's probably just a matter of time before this gets to solving HSV, which is a DNA virus. 

You can believe that you are stuck, unable to do anything, that the situation is hopeless and that nothing you do will ever matter and you have an "incurable" condition.  Or you can do something about it.

I've made my choice already. 

 

Share this post


Link to post
Share on other sites
Trace67
2 minutes ago, MikeHerp said:

As usual, this is not really true.  The present research isn't dependent on big investors to continue at this stage.  They started this research with donations from private sources, then when the research showed some promise, they were able to secure NIH grants, even though the grants are modest ($260,000 in 2016).

This is all elegantly explained in the Fred Hutch press release in 2016. 

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

Yes, eventually, this will need millions.  We don't hyave to worry about that.  If Dr. Jerome can continue to prove increasing efficiency and safety in the animal studies, this will definitely attract the attention of large institutional investors who have not just millions but billions to invest in break through technologies.

Remember, in 2016, they showed they were able to inactivate 2-4% of latewnt HSV in mice.  In May 2018, it appears they were able to increase their efficiency to nearly 20% to 30%, likely partially curing mice.  This is the first time that anyone was able to touch latent HSV in vivo.

I don't know whether they will ultimately be successful.  Nobody can.  But I do think that gene editing is here to stay.  Billions of dollars are being invested in gene editying technologies already--that's a fact, there are 3 companies with billions in market capital that are focused just on CRISPR.  It's probably just a matter of time before this gets to solving HSV, which is a DNA virus. 

You can believe that you are stuck, unable to do anything, that the situation is hopeless and that nothing you do will ever matter and you have an "incurable" condition.  Or you can do something about it.

I've made my choice already. 

 

There is absolutely nothing to suggest that they wont need millions more to move from this stage. Maybe so and maybe not.

Share this post


Link to post
Share on other sites
Trace67
8 hours ago, GotMeAtLast said:

For some reason I do not see the comments section on the FHC page. Can you post the link to the comments please?

 

 

works for me. Did you try a different browser? Here is a copy and paste.

 

 

 

Share this post


Link to post
Share on other sites
Trace67

Sort by
Oldest

Add a comment...

 

This just shows how much sufferers need a cure and are sick of hanging back in the shadows without a voice.
Like · Reply · 5 · 5w


amen! This important research is badly needed. Pls help spread the word!
Like · Reply · 2 · 5w


Thank you Fred Hutch! Everyone is supporting the great work at Dr. Keith Jerome's Lab!
Like · Reply · 3 · 5w

 

While I admire Fred’s work and his tenacity, I will be waiting for the announcement of Theravax from RVx. That formula seems more promising.
If it does turn out that Fred’sformula is better then I will have no problem uploading his efforts...……………………………………………………………………………………………………………….

..Always dumping on others efforts as if your way is the only way. You’re trying to be just like Halford and dump on all other science. NEWS FLASH...Even if Theravax finds a way to change the formula as not to cause more harm than good and I sincerely hope that they do for all of our benefits but even if they do it won't be long before something better comes along and completely negates it. There is no escaping this inevitability so why not embrace all efforts. We all want something better, and we don’t care who gets there first. If Theravax does then great or if someone else does then that’s great too. You’re playing for “team ich/RVX” only which makes you a failure at “team herpes/community.”
Like · Reply · 1d


Oh, and I'm sure Fred appreciates you giving him all the credit for his formula, . Lol....seriously?
 … well informed as usual I see.
Like · Reply · 1d

 

Edited by Trace67

Share this post


Link to post
Share on other sites
Trace67
45 minutes ago, MikeHerp said:

 

This is all elegantly explained in the Fred Hutch press release in 2016. 

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

 

 

From his own mouth in that link

"Jerome said it would take “several years of work” before researchers could think about testing the approach in human trials. "

and most likely several million $$$

Lets at least be honest about it.

Share this post


Link to post
Share on other sites
MikeHerp
43 minutes ago, Trace67 said:

From his own mouth in that link

"Jerome said it would take “several years of work” before researchers could think about testing the approach in human trials. "

and most likely several million $$$

Lets at least be honest about it.

This was published in 2016, a couple of years ago.  The work on this in 2016 cost $264,000. 

We can definitely be honest about that :)

http://grantome.com/grant/NIH/R21-AI117519-01A1

Share this post


Link to post
Share on other sites
Voyager2

We probably can't give as much as an NIH grant, which represents 300 million Americans, but I think $20,000 from the victims in only a few months time would make quite a statement since they probably don't get that much feedback.

I agree with Mike, let's not bug them too much about updates as the last thing we want to do is give them extra work. Maybe Andrea could just forward us a brief yearly update.

 

Share this post


Link to post
Share on other sites
Lost-hope

 

“In May 2018, it appears they were able to increase their efficiency to nearly 20% to 30%, likely partially curing mice.  This is the first time that anyone was able to touch latent HSV in vivo.”

@MikeHerp could you share the link to this finding 

Share this post


Link to post
Share on other sites
RNY18

"Mice..."

Any further progress since ?

Thanks 

 

Edited by RNY18

Share this post


Link to post
Share on other sites
MikeHerp
3 hours ago, Lost-hope said:

 

“In May 2018, it appears they were able to increase their efficiency to nearly 20% to 30%, likely partially curing mice.  This is the first time that anyone was able to touch latent HSV in vivo.”

@MikeHerp could you share the link to this finding 

Here it is: http://www.ucdenver.edu/academics/colleges/medicalschool/departments/neurology/CALS/Documents/2018 CALS abstracts.pdf

Page 7 of 16.

The paragraph that begins with: "Keith R. Jerome, Fred Hutchinson Cancer Research Center, presented data showing efficient in vivo gene editing of latent HSV via adeno-associated virus (AAV)"

 

And this is a continuation of the work they did in 2016, which is written up here (you can just skip to the "discussion" section): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5026126/

Edited by MikeHerp

Share this post


Link to post
Share on other sites
Trace67
8 hours ago, MikeHerp said:

This was published in 2016, a couple of years ago.  The work on this in 2016 cost $264,000. 

We can definitely be honest about that :)

http://grantome.com/grant/NIH/R21-AI117519-01A1

You know that doesnt mean that millions more wont be needed. Its not like its a done deal after they spend that grant. They may need several more larger grants and research can hit road blocks at any step. However, I do want them to succeed, and it probably is one of the only good hopes at the moment. I just want people to understand what they are donating for and not have some unrealistic hope that spending their last bucks is going to get them something. It is impressive that you guys raised 10K so keep going. I sincerely l hope it helps.

Share this post


Link to post
Share on other sites
fugazi1
12 hours ago, MikeHerp said:

It's a legit question. 

There's some general info about it here.  https://www.fredhutch.org/en/about/accountability-and-impact/every-gift-counts.html

In particular, note the first bullet point:

"Support early, proof-of-concept studies our researchers can leverage into federal grants many times larger than the initial private investment."

You're correct of course, that clinical trials, particularly phase 3, would require hundreds of millions of USD.  However, they aren't there yet.  At the moment, they are testing in animals and moving towards a larger scale animal trial.  The info relating to their last NIH grant (http://grantome.com/grant/NIH/R01-AI132599-01A1) states:

"This project is expected to demonstrate the feasibility of our therapeutic approach directed towards the elimination of HSV pathogenesis in vivo, and to provide critical information for the development of a larger scale animal study necessary to bring this new therapeutic approach to the clinic."

Bascially, the idea is, we are helping them fund pre-clinical research into this.  Keep in mind that, the 2016 grant for their HSV research from the NIH was only $260,000 (you can find his 2016 grant in the above link).  So our $10,000 raised, while it's still small, does help support this research in a tangible way.

We don't need to raise millions.  Once they show safety and efficacy in animals, which they are in progress of doing, large institutional investors will be drawn to it, and would likely fund into clinical trials.  Fred Hutch has spun off many basic research projects into clinical trials, and some of them have been commercialized (check on this by looking up Fred Hutch Center on wikipedia).

You may have heard of ExcisionBio, who are using CRISPR (first for HIV, but also tyargeting HSV).  They were able to secure $10 million of funding after showing in a peer reviewed paper, that they could edit HIV and HSV using CRISPR

We are trying to help position Dr. Jerome's team to get more NIH funding and possibly investor funding.  And for that, we don't need to raise millions.

The other goal of the fund raiser is to signal to relevant parties that there is interest in better treatments and a cure.  If many people are willing to chip in $50 or $100 to fund basic research, people will undertstand that there would be significant interest in paying for a cure.  By raising money, we are signaling that a potential cure or partial cure, could be a commercial success as well. There could be a market out there for what they are doing.  People would pay money for it.  It's not just a benign skin condition that nobody is really interested in improving.  That's what the fund raiser conveys. and communicates.

 

Thank you for explaining this to me. Much appreciated. I will definitely continue to donate.

Share this post


Link to post
Share on other sites
Miss Horne
7 hours ago, RNY18 said:

"Mice..."

Any further progress since ?

Thanks 

 

It was suggested that they have now moved on to rats (which is a more complicated rodent than the mouse), whether that is true or not we don’t know. @MikeHerp pointed this out earlier on, somewhere on this thread :thumbsup:

Edited by Miss Horne

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×

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.