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MikeHerp

Donations to Fred Hutch Center

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Miss Horne

MikeHerp I applaud you, this is well written and I think you should send it as it is. I hope it makes a difference. Thank you for your efforts. 

I’m going to deactivate my account today for a couple of months at least. I haven’t contributed much to the forum but I find there’s too much negativity here from some people, other people question if I have herpes, someone tried to sell me some herbs, someone even tried to chat me up, all of which I think is unpleasant and unnecessary. 

I’ve enjoyed reading your posts, they are always informative, helpful and give me a little bit of hope when I’m facing my darkest days. I’ll keep an eye out on your blog from time to time, who knows we might hear some good news in the future.

Wishing you all the best until next time.

Miss Horne :heart: 

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MikeHerp

Ohh, i'm sorry to hear that Miss Horne.  You seem like a lovely person.

I'll miss your pleasant and positive attitude here, and your contributions to the discussions. 

It's important that we all support each other so it's too bad that we are losing you.

Feel free to contact me here in the future.  

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Tone123
4 hours ago, Miss Horne said:

MikeHerp I applaud you, this is well written and I think you should send it as it is. I hope it makes a difference. Thank you for your efforts. 

I’m going to deactivate my account today for a couple of months at least. I haven’t contributed much to the forum but I find there’s too much negativity here from some people, other people question if I have herpes, someone tried to sell me some herbs, someone even tried to chat me up, all of which I think is unpleasant and unnecessary. 

I’ve enjoyed reading your posts, they are always informative, helpful and give me a little bit of hope when I’m facing my darkest days. I’ll keep an eye out on your blog from time to time, who knows we might hear some good news in the future.

Wishing you all the best until next time.

Miss Horne :heart: 

Thank you Mike and hopefully you get some positive feedback. Miss Horne it's too bad you're gonna leave us but I understand and agree with you reasonings.  I too will take a break as it seems like you can't get positive feedback or even questions answered from the experienced folks. I'm just gonna wait to see if I get a positive on the nect test in a few wks and go from there. 

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Lulupazoola

Miss Horne, so sorry to see u go. I know exactly how u feel!  I am dealing with it by not ever reading posts by certain people.  As soon as i see their name, i move on.  Still, it is a very poor representation of this forum to have it so dominated by such negative individuals.  It is not the environment people with this condition need for it to be, especially lately.  Its really out of control.

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Lulupazoola

Mikeherp--wonderful letter!  My only editing suggestion would be to add "as well as disability" dysfunction or similar word after "both psychologically and physically".  Many of us give up activities we previously enjoyed due to feeling ill or fear of triggering OB's (i.e. excercise and recreational activities that r somewhat physically demanding. I dont know how many people have their work affected by this disease, but i imagine many.)  I will donate if they adopt your suggestion and create a drop down button for HSV.  

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MikeHerp

Hey guys, I got a reply!  My gift WILL be earmarked for HSV research.  If you donate there, you can also send them an e-mail and ask your donation to go to HSV.  Because of this, I will likely donate again in the future.

They are also reviewing the donation target options on their website and, while they don't know yet if HSV will be included, maybe if more people donate and send a similar message as I sent, that might persuade them to add HSV as a specific donation target in their drop down menu.  I think that would be great.  Keep in mind that until Dec 31, your gift may also be matched.

It's completely up to you if you would like to donate.  I'm not personally soliciting that you donate, but for me, I thought it would make sense to donate somewhere and be a part of the research that is going on.  I really think Keith Jerome and the Jerome Lab are doing some great work.  Remember, they were the first to prove disruption of a portion of latent HSV in an animal in vivo, and according to the recent reports, it seems they've been making their editing experiments more efficient.  

I'd love HSV to be cured or to have better treatment options, and I'm confident there will be in the future, maybe faster than we even expect.  Once there are better treatments or a cure, I want to be able to say that I added something, did my part, even if it was modest.

Reply I got is below: 

___________________________

 

Hi [XXXXX],

Thank you so very much for your gift to Fred Hutch. I can absolutely direct your gift to HSV research.

I completely understand your suggestion to add HSV research to our funding option drop down menu on our website. In fact, the options listed on our website are currently under review. I do not know yet if HSV will be including pending this review, but I will keep you up-to-date on this matter as we move forward. Please note that you may always make a gift over the phone with me or by check via mail and have it directed to HSV research.

We will change your $100 gift from HIV/AIDs to HSV research this afternoon.

If you have any additional questions or concerns, please feel free to reach out to me. Your phone calls and emails are always welcome.

Sincerely,

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

 

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Roja
12 minutes ago, MikeHerp said:

Hey guys, I got a reply!  My gift WILL be earmarked for HSV research.  If you donate there, you can also send them an e-mail and ask your donation to go to HSV.  Because of this, I will likely donate again in the future.

They are also reviewing the donation target options on their website and, while they don't know yet if HSV will be included, maybe if more people donate and send a similar message as I sent, that might persuade them to add HSV as a specific donation target in their drop down menu.  I think that would be great.  Keep in mind that until Dec 31, your gift may also be matched.

It's completely up to you if you would like to donate.  I'm not personally soliciting that you donate, but for me, I thought it would make sense to donate somewhere and be a part of the research that is going on.  I really think Keith Jerome and the Jerome Lab are doing some great work.  Remember, they were the first to prove disruption of a portion of latent HSV in an animal in vivo, and according to the recent reports, it seems they've been making their editing experiments more efficient.  

I'd love HSV to be cured or to have better treatment options, and I'm confident there will be in the future, maybe faster than we even expect.  Once there are better treatments or a cure, I want to be able to say that I added something, did my part, even if it was modest.

Reply I got is below: 

___________________________

 

Hi [XXXXX],

Thank you so very much for your gift to Fred Hutch. I can absolutely direct your gift to HSV research.

I completely understand your suggestion to add HSV research to our funding option drop down menu on our website. In fact, the options listed on our website are currently under review. I do not know yet if HSV will be including pending this review, but I will keep you up-to-date on this matter as we move forward. Please note that you may always make a gift over the phone with me or by check via mail and have it directed to HSV research.

We will change your $100 gift from HIV/AIDs to HSV research this afternoon.

If you have any additional questions or concerns, please feel free to reach out to me. Your phone calls and emails are always welcome.

Sincerely,

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

 

That is so cool!! :-)

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emz

Amazing job @MikeHerp! Thanks so much for this- is there anyway this can be pinned to the main board on the homepage?  I feel like there are many of us that would probably consider donating if given half the chance.. I think it's a little drop of positivity if we are directly contributing to research that could bring a brighter future in treatments and potential cures. :)

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purp7e
Posted (edited)

Great news MikeHerp, awesome!

I will for sure donate, I will start with 60USD and continue to do so as soon as they earmark it as HSV.

If this will be earmarked HSV research we should also post and promote this donation at our local herpes websites for the country each of us represent. 

Can you please keep us updated @MikeHerp if they come back to you? 

 

Btw, did you select HIV/AIDS and then sent Andrea an email telling her to earmark it as HSV

Edited by purp7e

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MikeHerp
3 hours ago, purp7e said:

Great news MikeHerp, awesome!

I will for sure donate, I will start with 60USD and continue to do so as soon as they earmark it as HSV.

If this will be earmarked HSV research we should also post and promote this donation at our local herpes websites for the country each of us represent. 

Can you please keep us updated @MikeHerp if they come back to you? 

 

Btw, did you select HIV/AIDS and then sent Andrea an email telling her to earmark it as HSV

 

That's exactly what I did.

I selected HIV/AIDS and donated and then sent Andrea an email asking her to earmark it for HSV

And she replied and said she will definitely have it earmarked for HSV.  You can see her reply above. 

I'm certain if you do the same, she will also direct it to towards HSV.  And if you do, pls also politely ask that they add HSV to their donation target menu.  They are currently reviewing that.  

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LetsDoSomething

Mike, in a sea of Negativity and lost hope you have wonderfully articulated the plight of those with HSV. The better and more organized HSV sufferers can be, the better chance we have at being heard. I applaud your efforts. Thanks for being a knowledgeable and active voice in this community.

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MikeHerp

Guys!  I'm pleased to report the good news--somebody even beat to me to it above.

I got the below reply reply from Fred Hutch.  This means that you guys have been coming through with the donations and the request (emphasis added in bold bnelow).  Thanks for backing me up.

WE DID IT!  I'm really proud of this community, even while I hate being a part of it.  haha.

 My initial, $100 was modest, partly because I felt it was going to HIV/AIDS, not directly to HSV (granted HIV deserves funds too).

Now I kn ow that the funds will be earmarked directly, I intend to up the ante now and be a regular donor and continue to follow up.

 

 

___________________________________________________

Hi XXXX,

 

Thank you for your email. I am glad that we were able to correct your gift to HSV research. In fact, I have received many additional requests by your community who want to support Dr. Jerome’s work, so I was able to create a special fundraising page for your cause.

 

http://engage.fredhutch.org/goto/hsvresearch

 

Donations made to this page will go directly to Dr. Keith Jerome’s lab. You are welcome to share this page with others who may be interested in donating to HSV research as well.

 

I am going to be out of the office starting tomorrow, returning on January 14. If you are in need of any support with the page between now and then, please email my colleagues at fundraise@fredhutch.org.

 

Thanks,

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

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MikeHerp

I just checked the webpage they made.  It says they've raised $600 already! 

Keep it rolling guys!!

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MikeIke

I've never heard of these people. Anyone have more info on who they are and their credibility 

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Cas9
13 minutes ago, MikeIke said:

I've never heard of these people. Anyone have more info on who they are and their credibility 

That's what the internet is for Mike. Yes, they are very credible. Google Keith Jerome

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MikeHerp
Posted (edited)
1 hour ago, JeffH said:

I donated $1000.

time to put your money where your mouth is, everyone.

BUMP!!!!

I'm going to do the same soon.  Next week, i'm going for $1000 too!!  I'll post when I do it.

You the man JeffH.  As you saiod, exactly.  Time to put your money where your mouth is!!

Edited by MikeHerp

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MikeHerp
1 hour ago, Cas9 said:

I just donated $100. The total is now $1700

high5!!  BUMP!

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      Hey Guys, I prepared this draft message to the admin at the "+Support Groups" HSV community.  Pls let me know what you think if you have any comments or suggestions before I send it. ________________________________________________ Hello, Thank you for your message.   Perhaps I could run this by you here to get your view first.   In a nut shell, we are part of an HSV community which is helping to support HSV cure research.  I know "cure" is a bit of a dirty word in the HSV community, but please kindly hear me out and, if you don't mind, please check out some of the information I share. The Fred Hutch Cancer Research Center has been making some serious progress towards an HSV cure, even though commercialization is still tentative and some years away.  They are using a technique called gene editing, and with it, they have been able to target the latent form of HSV and destroy it by disrupting its DNA.  They've been able to remove over 50-90% of latent HSV when tested in mice, in effect partially curing mice from HSV. A lot of people are excited about this research.  It is partially funded by the National Institute of Health (NIH), but it is also being supported through private donations from our community. Our donations have enabled their team to progress to testing in guinea pigs before the funding for that was available from the NIH.  I'd like to ask you and the powers that be here, whether it might be ok to post about their research and to also post the link to the donation drive.  Our own admins at Honeycomb.click, have let us post about it and even pinned our main post on this, which has helped us to get many people to contribute to supporting this.  Over 200 members have donated and this has raised $38,000 for this research this year. These funds are being put to good use, as explained in the last video presentation from FHC, where Dr. Jerome who heads up this research has noted that these funds have enabled them to proceed to guinea pig testing. I'd like to share some info links with you. First is a 2016 peer reviewed scientific research paper where they showed they could edit and deactivate 2-4% of latent HSV in mice. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5026126/ Next is an article from Mens Health Magazine about the progress of this research from earlier this year, noting that removal of latent HSV has reached up to 90% in mice. https://www.menshealth.com/health/a26306319/herpes-cure-gene-editing/ That article obviously isn't a scientific paper, but it does help to explain what they are doing in layman's terms. Here is The latest from a series of video presentations from the Fred Hutch team.  A little past the 46 minute mark Dr. Jerome gives an acknowledgment to the funds that we have raised and explains how the funding is being put to use.   Finally, a link to the NIH website which shows the grant that this research has received from the NIH last year (this grant will be active through 2023). https://report.nih.gov/categorical_spending_project_listing.aspx?FY=2018&ARRA=N&DCat=Sexually+Transmitted+Infections (Note there are 4 pages there, and the grant for Keith Jerome is on one of the pages only ("Endonuclease-mediated disruption of latent HSV as curative therapy - $450,000 in 2018). Finally, the link to the FHC donations page for supporting this HSV cure research is here:  http://engage.fredhutch.org/site/TR?px=1709211&fr_id=1574&pg=personal After looking at these infos, please kindly consider whether we would be allowed to post about the research and about the donation drive.  We think it is important to get everyone on board, even if it's just a small donation of $10 to $15.  This is now winding through animal studies with the aim of being tested in human clinical trials.  This is a legitimate effort and we think it's an effort that is worth supporting by our community of HSV positives and related stakeholders.  I know you have posted a disclaimer about not posting about "cures", but we presume that to mean fake or scam cures ("the great Dr. Okoloko's medicinal herbal tincture etc.").  This is real and legitimate research and it's exciting. Please kindly consider if you would allow us to share this with your community.  If so, we'd be very happy to share with you first the draft post and take any comments or feedback from you before posting it.   Thank you for your consideration.   
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