new owners of this site

I agree

by Good Dog - 2023-12-16 08:19:37

New to Pace - I agree with your suggestions. They are good ones!

Dave

suggestions

by new to pace.... - 2023-12-16 08:23:05

Thanks, 

good dog

Mmmm

by piglet22 - 2023-12-16 10:34:36

I'm digesting this bit of news.

I know it's not Mr Musk messing about with Twitter, but there are certain words that catch my attention.

“exciting plans to improve the experience”, “synergy” “seamless transition.”,

“We are extremely excited”, “enhance the experience”

Maybe I’m just old-fashioned, but do I really want my experience enhanced?

For now, the jury’s out.

Good thing is we still have a site

by Lavender - 2023-12-16 11:01:04

I'm sure Blake will still be in this too, so no worries. Just glad the site was saved!😃 I would like to get notifications of PMs again and posts to threads I start. 🧐The icing on the cake would be for any threads with posts to move up to the top so we don't miss posts on older threads. 😉

email notices of posters to our queries

by new to pace.... - 2023-12-16 11:05:13

Lavender i got the email notice that someone had posted a comment.  I also have been recieving email messages that "person Named"  has sent me a PM.

I like your suggestion also.

new to pace 

A unique Club

by Gemita - 2023-12-16 11:20:41

Thank you for this post new to pace and for giving us the opportunity to comment on a change of management.  

I have chosen to stay on as a moderator because I care deeply about the members in this Club and I want to see it succeed and to continue to help those who are in difficulty.   

I look forward to finding out over the coming weeks what changes ForHearts has in mind to improve this site and how each one of us can also play a part.  I am reassured by the words:   “In the future, you can expect ForHearts Worldwide to engage with our community, and to seek feedback and ideas on ways to strengthen and improve our community forum”.  This sounds positive enough to me at this stage and I have plenty of ideas which you have all kindly suggested in the past about how we might make this an even better site.  

I believe it is up to us to stay positive, to embrace this change and to move forward with confidence.  If it doesn’t quite work out as expected, then we would at least have tried.  

I would like to take this opportunity of thanking Pacemaker Club founder Blake Hunter for all his considerable efforts over 20 years.  For me this is a very special Club Blake, with some amazing members and we would all be the poorer without it

Changes

by Penguin - 2023-12-16 12:40:53

Thank you for the message NewtoPace.  I found the email in my spam folder, otherwise I wouldn't have known. 

I too would like to thank Blake for his work with this forum. 

Edited: See comment from Gemita below.

Penguin

by Gemita - 2023-12-16 12:54:34

My understanding is that the consent period of 30 days from notification of this change of ownership is for Quebec Residents only, not for the rest of us.  Unless we Unsubscribe, they will assume we are happy to remain members?

It seems they have the authority under certain laws to act in the way they have without prior consent, see their statement  "In order to facilitate and complete the acquisition, your personal information has been shared with ForHearts Worldwide to the limited extent necessary to complete the transaction.  This disclosure was permitted by the business transaction exemption in Section 7.2 of the Personal Information Protection and Electronic Documents Act (PIPEDA).  At all times during the transaction, your personal information was treated in accordance with the requirements of all applicable laws relating to the use, disclosure, and consent to use and disclose the personal information, for which the Pacemaker Club and ForHearts Worldwide also had a written agreement".  

Gemita - Just Read That!

by Penguin - 2023-12-16 13:00:37

Apologies....didn't read it accurately. 

respond

by new to pace.... - 2023-12-16 13:04:30

Since i was not sure i did click on continue am not a quebec resident. did not want to be dropped.

maybe that wording needs some clarification.

new to pace

my notice came as an email

by new to pace.... - 2023-12-16 13:16:33

R2D2 you might look in your spam folder. for your email about the change.  Maybe the reason you did not get the notice as you are new on this site.

new to pace

Personal Information

by MrSquirrel - 2023-12-16 16:41:56

I am new to this forum and received my notification by email. As a UK resident I have no knowledge of US laws surrounding this type of transaction.

Can anyone explain in simple terms which personal information has been shared with the new owners of this site?

Also, has anyone received any assurances that this personal information now in the hands of ForHearts Worldwide will not be shared with their partners or sponsors who it seems are the manufacturers of many of our devices?

Further, this site has helped many people who have experienced problems with our devices and now that there is a direct link to certain manufacturers, I hope the independence of the past allowing forum members to be honest and sometimes critical of their devices will still continue.

MrSquirrel

by Gemita - 2023-12-16 17:40:08

The notification from Pacemaker Club states "If you have any questions or concerns about the transaction, your personal information, or ForHearts Worldwide, please contact our Privacy Officer at ldelise@pacemakerclub.com.  I suggest you send your message posted here to this email address for an official response. 

I am based in the UK also.  You ask, "Can anyone explain in simple terms which personal information has been shared with the new owners of this site?"  My understanding is that this primarily means whatever information you gave when you joined the Club, like name, email address, in order that they can contact you.

In the meantime, please read the Privacy Policy under the category "Club".  Pacemaker Club does not rent, sell, or share personal, corporate or business information with other people or other companies.  I am satisfied that my personal information will remain confidential and protected as described

Gemita

by MrSquirrel - 2023-12-17 06:10:47

Thank you for your response and as you suggest, I have emailed the Privacy Officer with my questions. I will be happy to share the response with members of this forum when received.

Like Piglet's post above, I too a feel that the jury is out on whether this aquisition will lead to positive change.

In my experience, phrases such as "exciting plans to improve the experience”, “synergy” “seamless transition.” are corporate speak for we are going to make changes..........that you may not like.

Call me cynical but it would not surprise me if in the next 3 months, the website will be moved to a server owned or leased by ForHeart, the website format will start to look and feel different culminating in a possible rebrand aligned with ForHearts own branding. Finally, I suspect that ForHearts will want control over members forum posts and will gradually replace current volunteer moderators with ForHeart employees.

I hope I am wrong on all counts and this forum stays largely the same as in its current form it helps alot of people. 

ForHeart

by new to pace.... - 2023-12-17 08:59:40

Like MrSquirrel i have started having concerns.  I was about to start a new thread  after reading their website.  But will contine on this one.

Noticed that they have made changes to the way they do things in 2022.  I do not know if it makes any difference that they are now listed in Tampa, Fl.

My thoughts are: why they would want to join with a pacemaker group such as ours?  Was wondering if they would ask us to  sign a form to donate our old pacemakers after we get a new one. For them to reuse in other countries. 

The contact person is the Excutive Director of the organization.

new to pace

ForHeart

by MrSquirrel - 2023-12-17 10:09:14

I agree with New to Pace regarding the question "why they would want to join with a pacemaker group such as ours?". Albeit, I'm not sure they joined our group rather than take us over!

I too have looked at their website and am struggling to see where our group fits in with their strategy and why they would buy us. 

Maybe they are a genuine corporate charity white knight, although my father told me there was never such a thing as a free lunch! 

We will have to watch this space to see what's in it for them.

notifications

by new to pace.... - 2023-12-17 10:17:12

For what ever reason have now not been recieveing an email telling me a new comment has been posted  to my message.

new to pace

MrSquirrel, New to Pace, Piglet

by Gemita - 2023-12-17 12:06:11

MrSquirrel, thank you for your comments and please do post, as a new post, any response you receive from the Privacy Officer.  That would be extremely helpful for all of us. 

Hopefully a ForHearts Worldwide representative will see your comments and those from New to Pace and Piglet and publicly respond when time permits?  I think you all ask very reasonable questions about the Club you have come to love and it is understandable that you don’t want it to lose its uniqueness and appeal.

I am an optimist at heart though and too old to change my ways now.  I am still hopeful we can all continue to keep this site largely what it is today and different from other platforms.  If this turns out not to be the case, then we can all make an “informed decision” in the future on whether or not to leave the Club.  I hope we will all be happy to remain with the Club.  I don't want to lose any of you.

In the days ahead I hope to learn more about what is planned, what initial updates we or ForHearts Worldwide might perhaps wish to introduce to upgrade this site.  I will keep everyone informed of any changes as we make them

Donating your old pacemaker

by Lurker (Doc DX) - 2023-12-17 13:33:36

new to pace.
 

Once your generator has been replaced there is not enough juice left in battery to do anyone any good.

i don't even know if it is possible to open one up and replace the battery. That requires a sterilized room and sanitary conditions. 
The only place to get a pacemaker with any life left in it is from a funeral director. More and more people are getting cremated and the PM has to be stripped out or it will explode. 
Don't forget your PM is registered in your name with the manufacturer unless they have a deal with the manufacturer to change that. 
Crusing the "way back machine" a few days ago I come across a person in the  third world with PM still registered to someone in the US.

Lots and lots of questions. 
 

donate your pacemaker

by new to pace.... - 2023-12-17 14:14:51

Lurker, a while back there was a discussion about donating your pacemaker to this group.  Some how i recall they are able to redo the computer part of the pacemaker. Do not ask me how .Since this is now not an approved way, it is not FDA approved.  Which is why i understand  the pacemaker cannot be used in the US.

new to pace

new to pace and Lurker

by Gemita - 2023-12-17 14:40:31

I don't think pacemakers or defibrillators can be recycled and reused in the U.S. but medical devices may be hand-carried by one U.S.doctor to another in a foreign country. It seems that pacemaker devices can be reused after appropriate sterilisation and functionality checks and I believe the University of Michigan is currently undertaking a large-scale clinical study with the FDA to obtain regulatory approval for the refitting of used pacemakers.

It seems we can donate in the UK:

https://heartrhythmalliance.org/aa/uk/programs/pace4life/donating-pacemakers

Of course I don't suppose they would put in a device that is low on battery.

next 3 months

by akaDM - 2023-12-17 18:02:04

"Call me cynical but it would not surprise me if in the next 3 months, the website will be moved to a server owned or leased by ForHeart, the website format will start to look and feel different culminating in a possible rebrand aligned with ForHearts own branding. Finally, I suspect that ForHearts will want control over members forum posts and will gradually replace current volunteer moderators with ForHeart employees.

...

I too have looked at their website and am struggling to see where our group fits in with their strategy and why they would buy us."

As it stands I agree that I don't see how the forum/club as it currently operates fits in with the aims of the charity.

One thing that has occurred to me is that the membership is a group of people in wealthy countries who have a positive interest in heart conditions and pacemakers. And are, on average, older.

What I hope not to see is prominent requests for donations, but find it hard to believe that we aren't viewed more as potential supporters rather than people needing support.

thoughts

by Tracey_E - 2023-12-17 19:18:35

Random responses to the above comments...

The long email was a introduction as well as getting the legalese out of the way.

Information, if I understand correctly, the site being sold means the information you provided when you joined will transfer to the new owners. User info is part of the website database so will convey with the site itself. The new owners have not yet made any changes! You've been given the opportunity to delete your user before they take over, if you choose. 

For Hearts is formerly Heartbeat International. To the best of my knowledge, they use brand new but near expiration date devices donated by the manufacturers. Near expiration just  means the FDA will no longer it to be implantd in the US, however it has a lot of life in it.

 Once a device has been implanted in a person it may possibly be donated for veterinary usesbut never human. They devices For Hearts implants and services are new.

Blake, the site owner, has had a relationship with For Hearts for many years. This is not some random new company that came along and took it over. About 10 years ago, a group of us from this site met in Tampa and attended Heartbeat's annual gala. If you dig back far enough (or look up my username) there are photos. We learned a lot and met some wonderful people and I came home with nothing but good feelings about them and the work they do.

As a moderator, I was asked if I wanted to stay on. I've been in touch with the new owners and am excited to see what's in store. As I learn more, I will share, but they are impressed with what Blake has built here and only want to enhance.

thanks for you comment Tracey_E

by new to pace.... - 2023-12-17 19:46:21

Now everything  is starting to make sense.  Did see previously something about that gala in Tampa. Before my time on this site.  As i live nearby to Tampa.

Waiting to hear from you about all the positive changes for us on the users of this site.

new to pace

Changes

by Penguin - 2023-12-18 04:53:21

The new owners have not yet made any changes! You've been given the opportunity to delete your user before they take over, if you choose. 

With respect, it would help to have those changes explained so that we can understand them before making a decision. 

changes

by new to pace.... - 2023-12-18 07:23:36

Penguin and the others I understand we should know something later today Monday,Dec 18,.2023.

new to pace

Penguin

by Tracey_E - 2023-12-18 08:51:50

The only information they have is your name and email. We were not asked for anything else when we joined this site. With respect, that's not a lot of information. If you aren't comfortable with them having that information while we wait to see what's coming, then by all means unsubscribe now, then rejoin later if you are comfortable.

Businesses get sold all of the time, most of them don't do the courtesy of giving us the chance to opt out before turning over the databases. 

more for Penguin

by Tracey_E - 2023-12-18 12:23:34

I got more informtion.

They have no intention of selling the site or its data. There are changes in store, but they are enhancements and I can't wait for y'all to hear about them! The resources and feel of the site will not change. As they make technological updates, the look will likely change but given how old this software is, that's a good thing. They have some great ideas, and more resources than Blake had access to  to use to implement those ideas. Good things ahead!

important update about this site from the new owners

by new to pace.... - 2023-12-18 12:31:11

Thanks Tracey_E  for keeping giving this up date from the new owners.

Please start a new thread when you get more information.  As this one is getting long.. 

new to pace