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

Help Support ValveReplacement.org:

honeybunny

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Just heard back from the public affairs guy at the Texas Heart Institute. THI is non-profit and so cannot sponsor us. But he copied a colleague on his reply, requesting her assistance in our endeavors. Crossing my fingers she can point me to some free money.

update: missed a phone call from the PA guy’s colleague. Phoned a got her voice mail. Waiting for her to return my call. One of her responsibilities per LinkedIn is to serve “as a liaison to promote education and awareness of the (THI) programs...”. Crossing toes too!
 
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honeybunny

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Hank , would have preferred to send this as a private message but your mailbox is full.

I just made another PayPal donation which, along with other donations mentioned on this thread, should cover another month of website hosting. This will allow us a bit more time to find a sponsor or funding. I feel certain there is grant money available; just need to locate it.

Of course this doesnt address the matter of your and Michelle’s time. In my first post on this thread I offered to help with that if there is something I can do. Not sure what that would be. Maybe moderating a few hours a week? Just let me know.

Hugs, Michele
 

Hank

VR.com Founder, Now just a Member
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You are all amazing.

Super grateful thanks go out to those who have contributed over the last several days. Your generosity will keep us going for the next two months! Michelle and I are continuing to take your thoughts and suggestions to heart.

Most of my time is spent doing the technical stuff like running upgrades, optimizing the sql database, backing up the forum regularly, patching issues when my inbox gets flooded with database errors, etc. The moderation piece is only a few hours a week as most times I am just responding to posts you bring to my attention.

If there are any technogeeks out there who have experience with this sort of thing, that would be awesome.

The greatest help would be someone to do more of what "honeybunny" is doing reaching out as an ambassador looking for partners.

This is all stuff I have done myself for 20 years and the type of activity I am less and less able to support.

There are also so many features of this software that remain unused. Any vBulletin savants out there?:Face-Cool:
 

AmyBL

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Hello VR friends. I have not been to the site for awhile and am sad & worried to learn about the site’s status. I just donated 50.00 and am happy to pay on a regular basis. Like so many others have written, this site was so important to me for the four years between my diagnosis and then surgery. It is important to me that others are able to learn from the collective wisdom of the group.
Hank I am humbled to learn of the hours you devoted to this site. Thank you from the bottom of my heart. I apologize for not grasping this earlier.
I can contact the home INR monitoring company I use to see if a sponsorship opportunity is available. Over the past 2.5 years, I have spoken to an actual human ONCE. However the insurance company is billed like clockwork. This leads me to think that there are a few dollars sitting around. Also, when I forget to report my results, the computer-generated voice lets me know that “we at Allere care about YOU!” Let’s see how far that caring extends!

Amy
 

Hank

VR.com Founder, Now just a Member
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Amy. Thank you so much for your contribution. Alere purchased the company who VR.org teamed up with in the very beginning to get this site started. After that acquisition, I tried for years to get them to sponsor us, but they were simply too big to care. Maybe times have changed. The original sponsor of this site was QAS "Quality Assured Services". Please let me know if you turn up anything.
 

Hank

VR.com Founder, Now just a Member
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Friends.. Amy's post really illustrated for me what we need the most. We need YOU! A network of ambassadors going out there rattling the trees looking for companies who are willing to continue this place with us. Companies, Dr's Offices, Equipment Providers, and Non-Profit organizations whoa aren't afraid of a dynamic, open, honest and courageous organization such as ours. Who do you know? Who can you contact?

That my friends is the answer to this challenge... What do you think?

I have never tried to make money from this site, but if there were revenue to make it worth my effort to spend 30 hours a week improving it, and also to keep it running, I think I have shown over the years that I have the desire.. 20 Years is a long time to keep something alive and that is a resume in and of itself.

The most awesome thing is that it is OUR resume, not just mine...
 

honeybunny

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I also think that’s the answer, Hank. I’ll repeat my offer of a few posts ago. If anyone has an idea of who to contact but doesn’t feel comfortable doing so, you can PM me the info and I will pursue it for you. I did not hear back from the spokesperson at THI yesterday but hope we make contact this week. I’ll try other Houston Medical Center sources, too.
 

CarolM

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Sep 15, 2012
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Cinnaminson, NJ
Regardless of the future, I'd like to say thank you! Pre and post AVR in 2012, this forum was a godsend, and I am appreciative and thankful for the information and opinions shared.
 

Agian

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Jun 10, 2013
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Adelaide, South Australia
I thought on-x was sponsoring.

I'll give them a buzz in the us&a. The accent might impress them how international we heart trippers are.
Actually, I might ring them a few times and do different voices.
... No seriously, bs aside, I'll hit the phone.
 

Jmprosser.lab

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Feb 2, 2018
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Los Angeles, Columbus Oh
I too have reached out to my pcp and Cardiologist at UCLA Health. They are amazing and I’m hopeful they can at least point me in the right direction—my cardio is very involved in new age studies and outreach. Love this place!
 

Homeskillet

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OR
I will gladly kick in also should y'all decide to retain the forum. The info. on here is absolutely life-saving...literally.
 

harrietW

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Oct 24, 2014
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Magrath, Alberta, Canada
Hank & Friends

After my diagnosis 5 years ago I don't know what I would have done or where I would be if it wasn't for this forum since my surgery 2.5 years ago I have made rare appearances as we all know life gets busy recovery is tough and energy sometimes is sparse but I still check in and I still post from time to time and I am beyond grateful that you guys are here. Nothing is more scary than facing open heart surgery alone except facing another open heart surgery alone you guys help me get through the worst of the worst and I am forever grateful.
Hank I've made a small donation and like you say it will hopefully get you through the next couple of months until perhaps sponsorships are found technical support has been found it would be a crying shame for this forum to not be accessible in the future the information is priceless the support is priceless the timing is priceless how many of us sit up half the night cuz we can't sleep and get on here and look for an answer to a problem or a solution to a problem or question I think I would have died without you guys and that's not even a lie thank you I am grateful and I will be watching for updates.
 

honeybunny

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Update on the Texas Heart Institute I wrote about earlier. I connected with Keri Sprung yesterday and we had a brief brainstorming conversation about site support. She gave me some leads that I will check out during my lunch breaks, one being pharmaceutical companies. If any of you know which companies I should contact for warfarin products, it would save me some Google-ing.

Hank, If you've not done so, you may want to empty your inbox. Keri read this thread, but if she had wanted to contact you directly without posting, she would not have been able to do so. Alternatively, you can PM a contact email to those of us trying to secure funding so we can direct potential donors directly to you for more information. Ultimately, you are the person they will need to speak with, and it's awkward when I can't answer questions.

Finally, Keri asked if we are an official 501(c) non-profit, explaining that this status could make a difference in whether or not organizations are able to fund us. This is the type of question that could be discussed directly instead of being posted.

Meanwhile, as Superbob would say...Staying the Course!
 

Eva

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Redondo Beach, CA
This site has been heavenly help to me and I pray that we continue to survive! Donation was just made. As others said, I needed to be reminded about it! So, pease don’t feel shy, Hank, for posting donations reminders!

No words will describe our gratitude to your and to Michelle’’s work and the help this site had been to us! Also, many (as mentioned) do not know that this is how we can survive!
Blessings.
 

epstns

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HB - can you share with us (or with me via PM) the general text you sent to potential donors? I have the hair-brained idea to reach out to Edwards Lifesciences and Boston Scientific - the manufacturers of my valve and pacemaker. Maybe a request from a patient, for the benefit of others might get their attention.
 

honeybunny

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epstns Steve, see my post #43 on this thread. I need to fire up my laptop to get the email I sent to THI. In both cases I personalized the appeal. I have not hear from Edwards. I think THI responded because I am local and because I once interned for their medical journal. If you want some help wordsmithing an appeal I’d be glad to help.
 

ShezaGirlie

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Somehow, divine providence brought me here today after 5 years or more of absence. I've been with Hank since day one when he found me in Dec 1999 on a list serve he started online. We were about 5 members in the beginning and this website has helped scads of folks since then. Well, this October I celebrate my year number 19 since AVR and I still feel great!. Howdy y'all….!
 

gregjohnsondsm

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Jun 2, 2014
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Des Moines IA USA
I also have not been here for a while, but was a regular reader during the 2 year process of selecting a valve / doctor and then recovering. And I have referred many others who came to me for advice to this site. For this reason:

This site has actual, factual information. It is unlike other sites where the emotions and feelings of the members are more important than the actual science and results.​

The information and experiences that are contained within this site are precious and we should not let it disappear. Annual fund drive, sponsors, ice cream socials, selling shirts or whatever. I got more information from pelicle, superbob, epstns, paleogirl, etc than I received from my own doctors.
 
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