The future of the site

Moderators: Suzanne, ~guin, Moderators

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

The future of the site

Post by Ozchrissy » December 3rd, 2013, 6:49 pm

To our dear Moderators, I was just wondering if there was anything we could do to secure the running of this site. I know I have no knowledge of computer programs or anything to do with the physical running of this place. I know that there are others on the site though who do have such knowledge, for example Mrag. I would be willing to help financially, as I am sure others would be. If we are having problems with previous founders or moderators of the site, I know there must be prioprietory issues and these seem to be taking a long time to resolve, would we be able to set up a new site, and just have a referral to it from here.

I feel there probably are heaps of people out there who could benefit from this site, new members and those who have not been able to access the site, so maybe we need to think outside the box and begin again, with not such a controlled site. Seems very sad, I know this site when I first came here was exactly what I needed, and I am sure others on here are the same, and I feel for those that want to, and cannot participate at the moment.

Just posting my thoughts, and wanting to help in some way if I can.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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dadmanbob
Posts: 974
Joined: July 14th, 2011, 7:28 pm
Location: PA

Re: The future of the site

Post by dadmanbob » December 3rd, 2013, 7:41 pm

I know who owns or setup the site If any moderator needs the info just PM me
BOB
ischemic cardiomyopathy NSVT, stent 1 left side 4/5 &1 right side on 6/9 2011
MI Heart attack unknown when it happened 20% dead muscle
CHF-3, PVD, CAD, CKD-3 & EF 35 now 55 12-19-11
ICD ST JUDE 6/29/11, CD2215-36Q, RVA LEAD, RA-LEAD
Med's
AMLODIPINE 7.5MG AM 5MG PM,ISOSORBIDE MONO. ER 120MG, PLAVIX 75MG
ASPIRIN 81MG,HYDRALAZINE 50MG X4,CARVEDILOL 50MG AM/PM, LIPITOR 80MG
Spironolactone 25mg am/pm,FUROSEMIDE 40MG, Calcitriol .25mg mon,wed,fri
ZANTAC 150MG

I welcome my ICD he is Electron a transformer

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mykidsmom
Posts: 4058
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 3rd, 2013, 7:42 pm

I know ....first of all ya need to contact the Site hosts and get all the info changed over....and for that you need the credit card number that is on file now ....to change to a new credit card...and then ya need to know the policies re activations etc etc....and follow them..a bit of reading would be involved...but the hosts generally have decent customer service and this customer service will firstly be able to tell if any costs are involved and help with any probems to do with the software.....if not the software company usually will help out.....generally on a site this old theres a very little to none charge...although i dont see any advertizing banners here so maybe there is a slight cost......shouldnt take very long at all chrissie...but its knowing where to go and having the information needed thats the important thing..

as i said before..id be more than happy to help out with costs if any and just tell me where to send a cheque..(shurrup peanut gallery yer not getting any )
I think.....Therefore I am.!!!!!

garya
Posts: 591
Joined: September 10th, 2010, 9:04 pm

Re: The future of the site

Post by garya » December 3rd, 2013, 8:20 pm

I know who owns or setup the site If any moderator needs the info just PM me
Is this super top secret information or just what whois publishes as required by law? Do you know a dollar value for the name/URL?

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dadmanbob
Posts: 974
Joined: July 14th, 2011, 7:28 pm
Location: PA

Re: The future of the site

Post by dadmanbob » December 3rd, 2013, 9:05 pm

garya wrote:
I know who owns or setup the site If any moderator needs the info just PM me
Is this super top secret information or just what whois publishes as required by law? Do you know a dollar value for the name/URL?

Tech Email: info@icdsupportgroup.org
(I deleted the information about the registration as it is now in my name. I will post more below, Freckles1880)
so no it is not top secret
Last edited by freckles1880 on December 4th, 2013, 8:42 am, edited 1 time in total.
Reason: to remove my information
BOB
ischemic cardiomyopathy NSVT, stent 1 left side 4/5 &1 right side on 6/9 2011
MI Heart attack unknown when it happened 20% dead muscle
CHF-3, PVD, CAD, CKD-3 & EF 35 now 55 12-19-11
ICD ST JUDE 6/29/11, CD2215-36Q, RVA LEAD, RA-LEAD
Med's
AMLODIPINE 7.5MG AM 5MG PM,ISOSORBIDE MONO. ER 120MG, PLAVIX 75MG
ASPIRIN 81MG,HYDRALAZINE 50MG X4,CARVEDILOL 50MG AM/PM, LIPITOR 80MG
Spironolactone 25mg am/pm,FUROSEMIDE 40MG, Calcitriol .25mg mon,wed,fri
ZANTAC 150MG

I welcome my ICD he is Electron a transformer

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Suzanne
Posts: 3590
Joined: October 1st, 2009, 8:42 pm
Location: Toronto, Ontario, Canada

Re: The future of the site

Post by Suzanne » December 3rd, 2013, 9:09 pm

From what I understand, Guin has made herself in charge of the site. Bob has been working on how to figure out the computer stuff...how to access and get passwords etc. I really know nothing on how to operate a site like this, or any site dontknw
I'm sure there are people here who could offer their expertise and help figure things out! I agree that it's taking far too long to get things sorted out. Perhaps if you know how to help, you could offer advice here, or private message Bob?
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: The future of the site

Post by Ozchrissy » December 3rd, 2013, 9:10 pm

I think as a community we really do need to be informed of what is going on. I find myself getting upset, and dreaming up conspiracy theories about all this. It is disturbing to think that a site like this could be held for ransom over a monetary value or because of a grudge etc. This site isn't one person, it is a community, and in a democratic society as we all purport to be, shouldn't we be given the opportunity to share in the important information regarding the future of this site. At the moment it all seems very 'secret society' to me.

I am not putting any dispersion on our current Moderators, I am sure they are doing their best, but a lot of us on here have a vested interest in this site. I would hate to have it fall apart.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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mykidsmom
Posts: 4058
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 3rd, 2013, 11:28 pm

Susanne bob would need a higher level of panel control and then hed have automatic access to all the information he needed........the regular moderator access doesnt usually give this level.....whoever owns the site ie..whoevers name is on with the hosts would be able to get and give this level..

Shouldnt take more than a couple of hours to get this sorted out......without the higher level there i doubt is much bob can do....re activations etc etc..you should all as mods have a skype meeting...(just a suggestion and see who has what whos supposed to do what...and how.) good luck
I think.....Therefore I am.!!!!!

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TruckerRon
Moderator
Posts: 3301
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: The future of the site

Post by TruckerRon » December 4th, 2013, 12:42 am

Should there be any real expense, please stay away from selling ad space! I'd rather donate a dollar or two each month than be subjected to ads for "meeting single women in [my hometown]" or "one weird trick for [losing weight, increasing testosterone, cutting auto insurance premiums by 40%, earning $17,865 per month at home]" or anything else.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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mrag
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Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: The future of the site

Post by mrag » December 4th, 2013, 7:42 am

I'm sure the icdsupportgroup domain can't be registered using only a single name (Freckles1880). That wouldn't exactly offer the sharpest contingency plan for the site and group. Is there a public document available stating the site name will never be sold for more than a nominal transfer fee? And has at least three distinct "beneficiaries" so we can avoid the current delays we now see?


dadmanbob wrote:
garya wrote:
I know who owns or setup the site If any moderator needs the info just PM me
Is this super top secret information or just what whois publishes as required by law? Do you know a dollar value for the name/URL?
(edited the information out of the posts, Freckles1880)
Tech Email: info@icdsupportgroup.org

so no it is not top secret
Last edited by freckles1880 on December 4th, 2013, 8:44 am, edited 1 time in total.
Reason: removed personal information
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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mrag
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Location: The Former Mushroom Capital of World when America was great

Re: The future of the site

Post by mrag » December 4th, 2013, 7:42 am

Double post, ignore
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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mrag
Posts: 4432
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: The future of the site

Post by mrag » December 4th, 2013, 7:54 am

TruckerRon wrote:Should there be any real expense, please stay away from selling ad space! I'd rather donate a dollar or two each month than be subjected to ads for "meeting single women in [my hometown]" or "one weird trick for [losing weight, increasing testosterone, cutting auto insurance premiums by 40%, earning $17,865 per month at home]" or anything else.
Not to worry. Registration might be minor and site hosting should be free. Some mods have already indicated they would absorb any operating costs for us so we need to continue to be supportive.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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freckles1880
Moderator
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Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: The future of the site

Post by freckles1880 » December 4th, 2013, 9:05 am

I removed the information from the above posts as far as the registered person for this site as it has been changed to my name. I would prefer my personal information not be made public on this site.

I, with the approval of all of the other moderators, have taken the registered rights to the domain and have the sign on to the host site. I do not OWN this site, we, the members are the owners as far as I am concerned. I am the registered person as it requires a person to hold the rights. As we get things worked out one or more of the other moderators will have powers to do what I can. I have shared passwords and information with another moderator. They are not restricted to only one other person.

We do have expenses related to the hosting of the machines that run our site and for the domain names we have the rights to.

It was Mark's desire and the moderators agreed that we do not want a support group that requires a "paid" membership. Access should be available to any member without required costs to them. We have not worked out how we will pay for these expenses yet but I assure you that all are now current and we will not let them become past due. The total annual fees are not really high but do require payment.

We are working on learning how to modify the site to allow more of the moderators to have admin access. One of our issues is being addressed, and it may not be answered for a few more weeks, as we have had to send a letter requesting access to that area.

We have 4 moderators and all of us are looking for ways to resolve our issues.

If you know how to work with the phpBB software please PM me so we can talk.

Yes we still need your support to maintain a viable support group.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 4th, 2013, 11:01 am

way to go freckles...you guys are on top of the game and nothing short of amazing ^5

I know little or nothing about the software thats been used here...ive only used Vbulletin.....but i did find the help site for the software here...and theres a chat/help group/community there im sure who could walk you thro any glitches.....heres the link.....https://www.phpbb.com/

now regarding the payment for the site, even though its low as you say and i totally understand you wanting to keep it free......why dont you set up so anyone who wanted could donate even a small amount anonymously to help cover costs....im sure every little $ would help

OK i'll now mind my own business hehe
I think.....Therefore I am.!!!!!

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Helen
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Joined: August 26th, 2005, 7:27 pm
Location: Franklin Square L.I., New York

Re: The future of the site

Post by Helen » December 4th, 2013, 12:41 pm

Since I was one of the first members of this group I wish I had a better memory to help out here but unfortunately I will be 80 years old this month and my memory has been slipping away. I do know that if you look into the member list you will see in 2nd place that one of the guys in the group, PWalker, did the major part of computer work to open the group. About 4th place was Shelby who helped organize a lot of the administrative parts of the opening. Don was the first person to pay any fees but he had some problems and left the group early on. That is when Mark came in and took over payments and managing, etc. I asked Mark very early on if we could all chip in to pay any fees needed but at that time he said the cost was very low and he would take care of them.. The next person I remember coming in and being a great help was Gwyn.

I would imagine that Don would have been the first name given to whoever it is but he is long gone.. He did the original start up work. Shelby is long gone as well as PWalke. I think Gywn would have more info for you.

I used to be able to manage executive offices before I retired but unfortunately these days I am sorry but I am not as smart now as I always thought I was. At one time I was the first one at NY Research Foundation to use the computer and then taught it to the employees there.... I thought I was smarter than most people...lol, lol, lol... Now I think everyone is as smart or much much smarter than me...ho hoho. It really does make life easier by not thinking I know so much.... I just thought I would give you those names of the original people who came here from the Zap group to start this group... I'm sure it will all get figured out. We're not going anywhere. Love, Helen
Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together.

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