Considering the end of VR.org - Looking for your thoughts

Help Support ValveReplacement.org:

Hank

VR.com Founder, Now just a Member
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The ValveReplacement.org forum has been alive for almost 20 years.

The things that has kept us alive for so long have been Personal sacrifice of my wife and I, donations from many current and past members and mostly, a site sponsor.

Well we no longer have a site sponsor, and my wife and I have no more to give.

So, we are at a crossroads.

What are your ideas and thoughts for how Michelle and i should move forward?
 

Superbob

Steely Resolve!
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I've been here since just before my OHS in 2005 and of course would hate to see it go. However, it has had a great run, for which I thank you and Michelle and all the members and visitors (and the sponsor!). I understand there may not be a road forward. I have no suggestions for continuing it as is. (Perhaps others will.) Some friends might figure ways to stay connected via other corners of social media. Also, there is another valve replacement site in which I've maintained a membership. Lots of good folks there, too.
 

dick0236

Eat the elephant one bite at a time
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Hank, personally I would be very sorry for this site to end. I have been able to understand a lot about heart disease since joining this site 11 years ago. I've always known this is a personal site that existed due to your vision and hard work. I'm also old enough to know that "all things come to an end". Thank you for your stewardship of this forum. Like we say about "valve choice"........whatever you decide will be the right choice for you.
 

JLmatus

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May 25, 2017
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Location
Wilkes Barre, PA
I'm relatively new to this site, only been a member since Feb 2017, but this site has been a great help to me throughout my AVR experience. I've learned a lot reading this site. Whatever you decide about it's future, I thank you for providing this service.
 

Hank

VR.com Founder, Now just a Member
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I have had several offers in the past to purchase the site, but simply cannot entertain those offers due to the fact that they would always include the database of members. We have always & will always respect the privacy of those who have registered here in the past.

Just the same, the posts here are visible to the world, but aren't something that we would ever want to market or pawn off to the highest bidder.

And when you get right down to it, the members and the posts are really the value we have to offer.

This leaves us with only two options.. Advertising or Donations. It has been a long time since I have asked, and I am not asking now because depending on the generosity of others and continually hounding people about it. I'm not a very good beggar.

Advertising takes a lot of time to maintain and ensure it isn't abused and doesn't become intrusive or abusive.

Thats why I started this thread and made it sticky. I'm hoping someone out there has some brilliant ideas on how the costs of the site (time and $$) can be covered in order to keep it alive.

In full disclosure, the monthly $$ costs are $129 and the time investment is anywhere from 1 to 10 hours per week.

One way or another, I have to make a decision by August 1st :-(
 
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pellicle

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Queensland, OzTrayLeeYa
Hank


Hank;n884241 said:
The things that has kept us alive for so long have been Personal sacrifice of my wife and I, donations from many current and past members and mostly, a site sponsor.

Well we no longer have a site sponsor, and my wife and I have no more to give.

So, we are at a crossroads.

What are your ideas and thoughts for how Michelle and i should move forward?
some interesting thoughts. I'd not noticed that the On-X had been removed (wonders about the back story on that). Some time back I made you offers of free web development support and assistance, you never replied. So I'd say that expired a few years back.

I've done a lot of work here myself in assisting people, its indeed why I come here. I've been slighted and maligned as much as heartfelt thanked ... so its all good on the balance.

As to selling, myself I think that's a good idea and ... well my own views on privacy are probably higher requirement than "the average facebook user" which is why there is so little data about ME on my profile and in my posts. It would take an AI a determined effort (probably half a second) to nail me to a name and address using cross referencing to other sources.

So what I'm saying is that if you sell this to a bidder then that will at least ensure its survival for a bit longer. It will also ensure that this data (what we've all typed) remains persistent for a little longer too.

Probably Google has it all mined anyway.

I say "thanks for your time and effort, thanks for creating this place and now sell it and move on with your lives." I've noted that many web forums are slowly fading and going as the world splinters into fragments under the umbrella of "easy" Facebook (but with no real substance).

Everything dies ... even those we love the most.

Best Wishes
 
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Zoltania

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I'm a member of another forum site whose owner runs an annual donation drive to cover the costs. So far he has been able to receive enough each year to continue operating. If you posted such a request every day for a week or two, once a year, perhaps you could cover your financial costs as well. I'll start right now by making a donation. I probably would have donated sooner if I had realized that this would be coming out of your pocket, Hank.

As for the time costs, I'm not sure how to help with that. Maybe if you get enough surplus donations you can hire a teenager by the hour?
 

nate99

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Jul 10, 2018
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Location
Los Angeles, CA
I'm a very new member too and kind of shocked by the possibility of losing this site. If there is another forum similar to it, please let me know. I just started reading this forum in the last two weeks since my anxiety really started to kick in, and I have gotten so much comfort from this place. I especially felt good that whether it be weeks from now or decades from now or ever that i get my valve replaced, I would have the people here to (virtually) hold my hand through this. I hope it doesn't go. I would be willing to donate if that will keep it afloat. As far as privacy goes, maybe i'm not as bothered about privacy issues as others, but i'm willing to give up some to keep this wealth of very specific and life saving information available. Whatever you decide, thanks for the help so far.
 

mrfox

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Jan 21, 2018
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London UK
What are the running costs? I'm willing to contribute but there are also lots of free discussion hosting options!

​​​​​​
 

mrfox

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And the obligatory: this site had been a positive force in my journey so I'd be pleased to contribute to offering that service to others as well
 

Agian

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Adelaide, South Australia
Yes, what are the running costs?
There is much much information on this forum. One could extract it and write a well-informed book.
It would simply be wretched if it all vanished, after all the time people have spent here..
 
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Paleowoman

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A reply I wrote just now was ‘unapproved’ - presumably because I had several links posted in it.

I would be very sorry to see the end of the forum.

Although I'm a member of a couple of other forums (not heart related) I know very little about how they are run, but I had a look at the info on the diabetes forum I'm on and it seems to be using what appears to be a free software package called Simple Machines. I would never have guessed it was anything less than professional - there is no advertising on the forum pages. There are members of the forum who moderate, and I think one or two of the members have some techy knowledge in case there's a software issue. Here's the link: http://www.simplemachines.org I don't have techy knowledge myself unfortunately.
 

Paleowoman

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Took me six different ways of writing those posts above which the forum software would allow and not dissapprove of as possible spam - even though they are definitley not spam. They were meant to be in one post and meant to link straight to the DSF forum page to illustrate the similarities to valve replacement forum. Phew I have outwhitted the mechanical moderator. I don't know if it is any help, Hank, though.
 

mrfox

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Jan 21, 2018
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To be honest software wise we could do better than what we have now

​​Though the easiest would be to use a something off the shelf for consistency and privacy people might want something hosted on its own machine which I guess must be happening here?
 

Homeskillet

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Mar 30, 2017
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OR
This forum has literally been a God-send for me personally, and I have suggested it to several others. I read here nightly and have gleaned more than I could ever describe.

In fact, it was here that I first saw the ad for the On-X valve that is now in my chest! Things that others have said to me personally have stuck w. me. In fact, I even acquired my home INR monitor through this site since someone had an extra one for sale. That monitor very likely saved me from a stroke shortly after I bought it.

A botched lab draw read 8.1 INR, which is suspected was wrong. I tested at home and it read 3.2 INR. The Dr. who called me told me to hold 2 night’s warfarin dosage. Can you imagine what that would have done to me when I was already in range?

Would hate to see it go, but would fully understand if that had to happen. I used to run a forum through VBulletin so I fully underhand the finances and time it takes. Will help in anyway I can.
 

Warrick

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Dec 27, 2015
Messages
639
Location
New Zealand
I can only sing the praises of this site, before this I knew nothing about any of this "heart valve stuff", I have recommended it to other valvers also.
I've learnt so much due to the generousness of you all. And it helped get me thru my recovery having others to relate to.

There are so many great people here and I do my best to support with my own experiences others facing this when I can as so many others do here.
Theres so much that you aren't told by the doctors or can't get to grips with by reading it written by someone who hasn't been thru this.
 

neil

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sad day if it closes down, but so many have left and cert not as busy as a few years ago, whichever direction you choose hank thank you, think of yourself and your good wife, best wishes mate
 

Hank

VR.com Founder, Now just a Member
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Thanks you everyone who has chimed in. The monthly costs are as I mentioned above, which is for the hosting of the site. The vBulletin software was purchased years ago and while it isn't the greatest, it doesn't have ongoing costs. Only the hosting, which runs on a "virtual" private server. There are cheaper hosting sites out there, but none that I have found which will handle the massive database of posts.

Sure we could convert to some other platform, but I simply do not have the time nor the resources to do that conversion.

I like the idea of having an annual fundraising drive, which ideally would allow me to pay for an annual hosting rate which would be a bit lower. Unfortunately this doesn't solve the ongoing cost of time to do the bare minimum to keep it running.

Please keep the thoughts and ideas coming..
 

ponygirlmom

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May 2, 2008
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Fountain Hills, Arizona
Wow -- This is ironic. Ten years ago exactly I was leaving the hospital with a new aortic valve. I was a very involved member of this forum at the time, and for several years afterwards. After I while I felt I didn't have much to contribute, so I stopped coming. Now I am facing another valve replacement, so I cam back, only to find that the community may disappear.

Hank -- I have two suggestions for you. I make them not just as a user of various forums, but also as a communications professional. First, have you considered a Slack workspace for this group? The free version works very well, and I believe the paid versions will not cost as much as maintaining this site. A Slack workspace would be much, much easier to use from mobile devices. I can give you more information if you would like. I admin a few Slack workspaces.

The second suggestion is not my favorite, and I'm sure it isn't yours either, or you would have made the move years ago: A closed to secret Facebook discussion group. The major disadvantage of Facebook is that it doesn't give the privacy and anonymity that some people need to discuss sensitive medical problems. An advantage is mobile ease of use, and zero cost.
 
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