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Old 29-08-17, 12:13 AM   #31
jacqueline
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Join Date: Feb 2008
Posts: 43
Default Re: Moving from Message Board

Quote:
Originally Posted by Mercury View Post
Hi HDA Team

As someone who has been hacked and trolled, causing considerable financial and emotional distress - I haven't used the message board for sometime. I am extremely concerned about migrating to any site and the subsequent problems this could cause.

I have reviewed the terms and conditions of this message board and I can't see anywhere that I have agreed that my postings can be moved onto a completely different, presumably commercial, hosting service.

I have no wish or desire to be a member of Health Unlocked or have the risk of any of my data being compromised by migration or by a commercial enterprise.

Please cancel my membership of this message board and remove all previous posts before migration to the new hosting service. Please email me directly to confirm that this has been done,

Thank you
Hiya Mercury,

I asked Bill to remove all my posts long ago because the HDA have no intention of making this message board work. Plus my family are now 10 years older than they was in when I first joined. Which makes a big difference to being able to put your most intimate posts and thoughts on here.
BUT when I have just popped back after the jungle drums tell me that the HDA are very rudely passing me and everybody else on here over to a conglomerate of a site that is enormous. I then notice that my request to Bill to remove all my old posts didn't work. I still have over 700 left that people can look back at.
That is totally out of order. Especially after I told him the reasons that I wanted my old posts removing.
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Old 29-08-17, 12:36 AM   #32
Allan
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Default Re: Moving from Message Board

.
In amongst all this current argy-bargy is the fact that there will be no cure for this disease any time soon. There are hundreds of HD research papers written every year but that’s so the authors can make progress up the ladder of their chosen career. They are, in the main, not looking for a cure.

Those that are researching the disease with intent are on a personal or institutional mission to be “the anti-Huntington hero”. It’s 50/50 for them too as to whether it’s for their personal glory or their patients’ respite. They know little or nothing of what happens on a daily basis within an hd-family home. So, this daily, tortuous struggle for hd-individual and Carer alike is only partly relieved by therapies. For the hd-individual it can be music, animals, computer gaming, mountain climbing, running, smoking or just plain watching TV. For the Carer it’s often “the bottle”, medication and the Message Board. Have you noticed when many of the messages are posted? Well, it’s very early morning or very late at night. We know why that is. Do you?

The Message Board is our lifeline and\or crutch. Take me, I don’t want to hide away on some blog that’ll never be read unless someone stumbles across it. I write much of my balderdash, baloney, claptrap, nonsense and common sense here - sometimes flippant, sometimes with my odd humour, sometimes angry, sometimes sad. It’s my release of internal pressure …

But most of all I appear on this Message Board because, here and now, we’re all in it together - and we can’t say for better or worse because we know the final outcome. There’s no cure, there are limited therapies [medical and recreational], there’s little or no “on-hand” medical expertise when we need it . The only know-how and expertise that we can find during our odd hours is here, among like-minded people who, in another life, would never have met each other - but are now firm friends through the vehicle that is this clunky old [in technological terminology] Message Board.

We have all helped each other along the downward, spiralling-out-of-control path with the background knowledge and good advice from many of our SHDA’s.

One day this dreadful disease will be cured - by a computer. Well, probably by a network of hardworking but dispassionate super-computers.

“Ones and zeroes, the basic positions of computer switches, in their trillions make the digital revolution. Signals, switches, packets set the ones and zeroes in motion, making them more productive for the people who build, maintain and use the networks of digits.

The ones and zeroes of computer networks are almost as potent as the four bases of DNA for shaping human interactions and institutions. As the implications of these changes reverberate for years, possibly the most amazing fact is that all talk of the internet revolution will gradually disappear, as future generations will simply take for granted the momentous changes discussed here.”


Werner Weidenfeld: “The World of Ones and Zeros: Social Consequences of Digitalization”

.
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Old 29-08-17, 10:03 AM   #33
jacqueline
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Join Date: Feb 2008
Posts: 43
Default Re: Moving from Message Board

Quote:
Originally Posted by Allan View Post
.
In amongst all this current argy-bargy is the fact that there will be no cure for this disease any time soon. There are hundreds of HD research papers written every year but that’s so the authors can make progress up the ladder of their chosen career. They are, in the main, not looking for a cure.

Those that are researching the disease with intent are on a personal or institutional mission to be “the anti-Huntington hero”. It’s 50/50 for them too as to whether it’s for their personal glory or their patients’ respite. They know little or nothing of what happens on a daily basis within an hd-family home. So, this daily, tortuous struggle for hd-individual and Carer alike is only partly relieved by therapies. For the hd-individual it can be music, animals, computer gaming, mountain climbing, running, smoking or just plain watching TV. For the Carer it’s often “the bottle”, medication and the Message Board. Have you noticed when many of the messages are posted? Well, it’s very early morning or very late at night. We know why that is. Do you?

The Message Board is our lifeline and\or crutch. Take me, I don’t want to hide away on some blog that’ll never be read unless someone stumbles across it. I write much of my balderdash, baloney, claptrap, nonsense and common sense here - sometimes flippant, sometimes with my odd humour, sometimes angry, sometimes sad. It’s my release of internal pressure …

But most of all I appear on this Message Board because, here and now, we’re all in it together - and we can’t say for better or worse because we know the final outcome. There’s no cure, there are limited therapies [medical and recreational], there’s little or no “on-hand” medical expertise when we need it . The only know-how and expertise that we can find during our odd hours is here, among like-minded people who, in another life, would never have met each other - but are now firm friends through the vehicle that is this clunky old [in technological terminology] Message Board.

We have all helped each other along the downward, spiralling-out-of-control path with the background knowledge and good advice from many of our SHDA’s.

One day this dreadful disease will be cured - by a computer. Well, probably by a network of hardworking but dispassionate super-computers.

“Ones and zeroes, the basic positions of computer switches, in their trillions make the digital revolution. Signals, switches, packets set the ones and zeroes in motion, making them more productive for the people who build, maintain and use the networks of digits.

The ones and zeroes of computer networks are almost as potent as the four bases of DNA for shaping human interactions and institutions. As the implications of these changes reverberate for years, possibly the most amazing fact is that all talk of the internet revolution will gradually disappear, as future generations will simply take for granted the momentous changes discussed here.”


Werner Weidenfeld: “The World of Ones and Zeros: Social Consequences of Digitalization”

.
Good morning Allan,
I can only hope beyond hope that your first two paragraphs are wrong. But what do I know?.
As for the rest of your message I know that you are correct.
This message board is as necessary as an "end of life" talk is to us in this HD world.
How dare the HDA even think of removing it from our lives.
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Old 29-08-17, 11:43 PM   #34
Allan
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Join Date: Sep 2012
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Posts: 1,098
Default Moving from Message Board

.
Hi everyone

When the very popular FriendsReunited website closed down early last year they emailed members explaining the situation [that they were being overtaken by the new versions of Social Media: MySpace, Facebook and the like] and that members had time to retrieve any photographs, files, etc that they may have placed there over the years. Very thoughtful. That was the correct way to end an era of “newish but overtaken digital technology”.

Here’s some relevant reading:

Going digital: what charity leaders can learn from tech startups
  • Charities are full of good and bright people with loads of ideas, but when it comes to creating digital products, are they the right people? Probably not.

  • Money, or lack of it, is often behind why actions are taken and decisions, based on imperfect data and information, are made quickly. There are no reports to write, there’s no one else to keep in the loop, and social impact isn’t measured. A team is assembled and everyone eats, sleeps and breathes the project – often in a very unhealthy way and with a great deal of pressure.

  • Compare that to creating a digital product in a charity. The initial driver is often a need to diversify revenue streams or save money. Risk averse trustees and senior managers, often unfamiliar with technology and uneasy about the digital project anyway, make all the commissioning decisions and sign things off. They also meet infrequently which sits badly with anything agile.

  • If you’re a charity leader, accept that creating and launching anything digital is high risk from the outset. Prepare business cases and conduct post-mortems on failed projects but start small and allow your teams the freedom to move quickly.

  • On a bigger scale, across the sector we should look at helping charities learn from each other and share their secrets of success in digital. Maybe we could create a charity technology network – albeit a lean one that isn’t onerous or bureaucratic.

Managing an online community – what charities can learn from giffgaff
  • Utilising your community and allowing them to speak for you is key to engagement.

  • Your online community needs to be fed with content on a regular basis, and not just regurgitations of your organisation’s key messages or, worse, press releases.

  • Consulting with your communities can be an amazingly powerful tool. As well as building a sense of belonging, you can test ideas and make sure you’re doing the right thing.

  • Most charities enjoy a positive reputation, however, encouraging feedback means opening the doors to complaints and negative comments, too. If you receive negative comments in your community, don’t rush in. Negative feedback can lead to a discussion and a discussion can lead to your greatest advocates stepping forward to defend your work or decisions. This is far more effective than attempting to quash debate with an organisational statement.

  • Be prepared and have a step-by-step strategy in place to enable you to effectively respond to and crucially – recover from – any major issues. Focus your energy on your most engaged communities and keep in touch with them.

Social networking and online forums – when does the DPA apply?

Institute of Fundraising

There’s much more of course …

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 30-08-17, 06:22 PM   #35
shiraz
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Default Re: Moving from Message Board

I find it incredulous that the moderator/Bill who broke this ghastly news to us that we, by far and away, the carer's of those with hd has not responded in any way shape or form to the complaints raised. So...as per Mercury's request, I hereby request that all my details, posts, threads, comments are deleted entirely before you deem that they shall simply be transferred over so some massive unknown mega-conglomerate of a nosey-parkers charter called HealthUnlocked or whatever it is. You don't seem to get that this new site is primarily for those who are suffering a condition and not for the carers? Secrets and lies - my life is filled with enough of those. Email me when my request has been completed.
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Old 30-08-17, 08:18 PM   #36
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,473
Default Re: Moving from Message Board

I have just logged on as I do randomly, and am very surprised to read the message board is ceasing, I too do not give permission for any of my messages to be moved, there is some very sensitive stuff on there, that I shared when I was desperate and I certainly would not want people reading it, that were strangers to me. During the four years my husband was very ill, the support I received from other members on here was invaluable. I was happy for the post to remain for other HD families to see, as there is a lot of valuable experience and information about results on medication, practical support on dealing with issues. I do not give permission for my lengthy thread 'here we go again' to be transferred.
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Old 30-08-17, 10:29 PM   #37
Cupcake
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Location: East Anglia
Posts: 1,473
Default Re: Moving from Message Board

Bill I have taken time to look at the new site you are promoting. I am not the worlds best when it comes to technology, and have found the site quite difficult to manoeuvre around. Maybe it will seem easier when it is up and running, but I fail to see how you will fit categories into it, to me it looks like it will just have the most recent post showing. I found it very frustrating trying to choose a user name, the ones I was selecting to start with were not valid, I wanted something I could remember easily, and not have to create yet another user ID? I really can't see the advantage of using that site, and it makes me wonder whether it is because you don't want to have to moderate this board?

Just feels to me it is something else head office don't want to be bothered with. The face book page is not used to its full advantage and Joe Bloggs can't add anything to it, without being checked out, I just wonder about it all really. Why can't the message board continue as it is?
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Old 30-08-17, 10:40 PM   #38
Crystal
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Join Date: Sep 2015
Posts: 212
Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
I find it incredulous that the moderator/Bill who broke this ghastly news to us that we, by far and away, the carer's of those with hd has not responded in any way shape or form to the complaints raised. So...as per Mercury's request, I hereby request that all my details, posts, threads, comments are deleted entirely before you deem that they shall simply be transferred over so some massive unknown mega-conglomerate of a nosey-parkers charter called HealthUnlocked or whatever it is. You don't seem to get that this new site is primarily for those who are suffering a condition and not for the carers? Secrets and lies - my life is filled with enough of those. Email me when my request has been completed.
I too, have been waiting and expecting some response from Moderator/Bill..... I, too, am requesting that no details of mine.... posts,threads, etc be transferred to this new site in any way, shape of form (format). If our recent negative posts are not being responded to though, will our requests be seen and acknowledged...or do we have to email HDA to 'formally' state our requests!? End of September will soon approach! Not happy! We should have been asked for our agreement on this.....
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Old 30-08-17, 11:05 PM   #39
Crystal
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Join Date: Sep 2015
Posts: 212
Default Re: Moving from Message Board

Quote:
Originally Posted by Cupcake View Post
I have just logged on as I do randomly, and am very surprised to read the message board is ceasing, I too do not give permission for any of my messages to be moved, there is some very sensitive stuff on there, that I shared when I was desperate and I certainly would not want people reading it, that were strangers to me. During the four years my husband was very ill, the support I received from other members on here was invaluable. I was happy for the post to remain for other HD families to see, as there is a lot of valuable experience and information about results on medication, practical support on dealing with issues. I do not give permission for my lengthy thread 'here we go again' to be transferred.
Hi CC....... This must be distressing for you (and others)! to stumble across, where changes to this MB are seemingly going ahead. My posts are not that many in comparison to others and yet some posts are sensitive and personal.... when we are feeling at our lowest, that I too, would be unhappy to have 'transferred'. My hubs family are 'split' when it comes to awareness and acknowledging their own HD risks....and I have to respect that too, even if I don't necessarily agree with their views. I really hope this decision will be looked at again.... but I am not hopeful. I also received enormous support (including advice and understanding you gave me)....and I thank you for that.... but this change is receiving so much negative response, it really needs to be put 'back on the drawing board'!
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Old 30-08-17, 11:14 PM   #40
Crystal
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Join Date: Sep 2015
Posts: 212
Default Re: Moving from Message Board

Quote:
Originally Posted by Allan View Post
.
Hi everyone

When the very popular FriendsReunited website closed down early last year they emailed members explaining the situation [that they were being overtaken by the new versions of Social Media: MySpace, Facebook and the like] and that members had time to retrieve any photographs, files, etc that they may have placed there over the years. Very thoughtful. That was the correct way to end an era of “newish but overtaken digital technology”.

Here’s some relevant reading:

Going digital: what charity leaders can learn from tech startups
  • Charities are full of good and bright people with loads of ideas, but when it comes to creating digital products, are they the right people? Probably not.

  • Money, or lack of it, is often behind why actions are taken and decisions, based on imperfect data and information, are made quickly. There are no reports to write, there’s no one else to keep in the loop, and social impact isn’t measured. A team is assembled and everyone eats, sleeps and breathes the project – often in a very unhealthy way and with a great deal of pressure.

  • Compare that to creating a digital product in a charity. The initial driver is often a need to diversify revenue streams or save money. Risk averse trustees and senior managers, often unfamiliar with technology and uneasy about the digital project anyway, make all the commissioning decisions and sign things off. They also meet infrequently which sits badly with anything agile.

  • If you’re a charity leader, accept that creating and launching anything digital is high risk from the outset. Prepare business cases and conduct post-mortems on failed projects but start small and allow your teams the freedom to move quickly.

  • On a bigger scale, across the sector we should look at helping charities learn from each other and share their secrets of success in digital. Maybe we could create a charity technology network – albeit a lean one that isn’t onerous or bureaucratic.

Managing an online community – what charities can learn from giffgaff
  • Utilising your community and allowing them to speak for you is key to engagement.

  • Your online community needs to be fed with content on a regular basis, and not just regurgitations of your organisation’s key messages or, worse, press releases.

  • Consulting with your communities can be an amazingly powerful tool. As well as building a sense of belonging, you can test ideas and make sure you’re doing the right thing.

  • Most charities enjoy a positive reputation, however, encouraging feedback means opening the doors to complaints and negative comments, too. If you receive negative comments in your community, don’t rush in. Negative feedback can lead to a discussion and a discussion can lead to your greatest advocates stepping forward to defend your work or decisions. This is far more effective than attempting to quash debate with an organisational statement.

  • Be prepared and have a step-by-step strategy in place to enable you to effectively respond to and crucially – recover from – any major issues. Focus your energy on your most engaged communities and keep in touch with them.

Social networking and online forums – when does the DPA apply?

Institute of Fundraising

There’s much more of course …

.
Hi Allan......thank you for this interesting info! Won't pretend I have read it all in great detail..... yet! Too busy complaining about the changes! Hope to have read it all before your next instalment though!
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