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ACOR discontinued? New website?

todd121
Posts: 436
Joined: Dec 2012

I received an email from Gerald White today (because I'm on his email list from ordering his book and CD) that indicated that ACOR was being discontinued and a new website called www.smartpatients.com was taking its place? I have been meaning to join ACOR for some time, but hadn't gotten around to it. I was looking for information about the change here on our board, but hadn't seen it. Is anyone aware of this change and what's going on? Is ACOR now replaced by this new site? Is it as good?

Todd

NanoSecond's picture
NanoSecond
Posts: 474
Joined: Oct 2012

Todd,

This is an extremely positive development for all of us who were on the KIDNEY_ONC and/or the other associated ACOR sites. It is an updated and different (more web-centric) format - it is a more modernized (and logical) extension of ACOR.  Many new features are coming on line and will be added over time.  The Clinical Trials list and search function is invaluable. That is just one of many examples.

But I actually assumed you already were a member.

I highly encourage you (and everyone interested) to sign up ASAP.  You will be amazed at some of the discussions already underway. One of the most important new features is how this site now encourages "cross-disease" discussions.  So if you are interested you can learn not just from other RCC patients and care-givers - but also from all other kinds of cancer sufferers as well. People outside of the ACOR communities can request and get an invitation to join the website (as long as they aren't researchers or pharma people or others unqualified to join).

New users can request an invitation at: www.smartpatients.com

Hope to "see" you there (as well as here, of course).

 

 

 

Djinnie's picture
Djinnie
Posts: 628
Joined: Apr 2013

Hi Todd,

I spoke to Gerald White last night and he advised me about the newer site Smartpatients, he kindly sent the link so I have just joined. I am waiting for his book and cd. What a remarkable man he is,having overcome cancer three times, I found him to be not only inspirational but also selfless. I asked him about the postal costs for sending the package to France because I know it is not cheap. He advised me that he just wanted to get the word out to everyone suffering from this disease, he was not concerned about postal costs. I must say our conversation had quite a profound effect on me, I am now looking forward to receiving the package.

Djinnie x

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's funny that you heard about SP from Jerry because he only joined SP 3 days ago.  I instantly welcomed him there with the unalloyed enthusiasm of a fan, as did Robin Martinez, whom you'll soon discover to be a lady of high intelligence matched by a rare quality of fine judgment and diplomacy. Robin is one of the Listowners of KIDNEY_ONC and one of the prime movers in creating SP. Robin widened the "tags" to the "conversation" (thread) there so that more people who know Jerry would spot it and, predictably, numbers of KIDNEY_ONC/SP members have come on, singing his praises.  He's a remarkable human being.  I wrote a review (which you can see on the Amazon web-site) of his book/CD , which gives more biographic detail and indicates why he is so highly regarded by all who know of him.

Incidentally, I also welcomed Jerry here, last year but the strict policy of CSN with regard to people who have something to "sell" meant he was barred from continuing here.  (See the short-lived "Guided imagery" thread  I started on Feb 1 2012 at 

http://csn.cancer.org/node/234956  ).

I took this up with CSN admin and may do so again because his contribution is so valuable.  You won't find any evidence of Jerry by searching for him as a member here but there are traces that will give you some insight into the man e.g. in the CSN forum entitled "Caregivers" (which you've probably never seen) there's a thread Jerry started fifteen months ago titled "The importance of Caregivers..."  If you'd like to see it, it's at 

http://csn.cancer.org/node/234961

Smart Patients is already a brilliant website and Jerry joining is yet another plus point.

Djinnie's picture
Djinnie
Posts: 628
Joined: Apr 2013

I wondered if some of the posts on SP by a member from the UK was you Texas. The fact that the member was collating information regarding kidney cancer and the phraseology was so similar, it would seem to be too much of a coincidence.

I read quite a lot of the posts on SP last night after receiving the link from Jerry. He also sent a paper regarding how he recently overcame lung cancer, quite inspiring. We had quite a good chat not just about cancer but also about Texas, I lived not far from his home town a few years back.

Thanks for posting the links, I will look them up today. I like to read and collect information, it is always a journey of discovery.... I have to say you are quite a powerhouse yourself Texas.

 

Djinnie

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Todd, like Neil, I thought you would be aware of these developments. 

There's no point in joining ACOR now - forums such as the Chromophobe one have already been closed and KIDNEY_ONC's closure is imminent.  A handful of us KIDNEY_ONC enthusiasts have been trying to urge its stragglers  to give up posting there and move over to SP.  I keep encouraging the reluctant adherents of the old List to give it a try - it's much newer technology and will take some a while to get the hang of but when you do it's brilliant.

It's worth stating that there are no plans, so far, to move the valuable KIDNEY_ONC Archives (a real treasure trove going back about 16 years) to SP but the Archives will be preserved for future reference.

Most of the regular, active participants in KIDNEY_ONC have moved over to SP which offically opened to the public not many days ago.  It was originally confined to kidney cancer, for practical reasons, but is now open to folks from all other cancers and will, in due course, be opened to ALL patients (and caregivers, of course). 

You wouldn't have heard about it because it's been kept under wraps.  Five or six members of KIDNEY_ONC were invited as "VIP" members to participate in the initial testing, trouble-shooting and development of SP until it was deemed fit enough for purpose.  That handful of members happened to include two who were also regulars here - Neil and myself.  I think Neil was invited because of his intelligence, fervent research efforts and the amount of knowledge he has accumulated on kidney cancer and his specialties of nutrition and of the approach to cancer as a metabolic disease (as opposed to the genetic obsession that has been in favour for a while).  I was probably invited because I was one of the most active posters there, constantly asking questions, but also because of my experience as a computer software tester.  (In addition, I had advocated, a long while ago, that ACOR should move from old listserv technology to current website technologies.)

Over the last year or so, I've made innumerable posts on KIDNEY_ONC, and one or two other cancer forums, but for the last six or seven months, most of my posting activity has been on Smart Patients.  I've seen its ease of use come on in leaps and bounds in that time and I'm confident Neil will endorse that view.  Incidentally, he and I have been conducting our dummies level debates there and inviting more knowledgeable people to answer some of the questions we keep coming up with.

That leads me to a note of caution.  With your evident quest for knowledge, you'll have a field day there, Todd, learning much more.  However, some circumspection is required. There are folks there who know vastly more than you could ever hope to learn - it's a much more professional population than here - including many academics, doctors, pharmacists, medical physicists, specialist RCC researchers and the like.  Nonetheless, most are there qua either patients or caregivers and are very welcoming.  The patients over there are much more concentrated at the bad end of the cancer spectrum than on CSN, such as those of us who are stage 4 grade 4 and not expected to live for much longer and so the tone is considerably more intense than here (though also light-hearted at times).  That said, there are plenty of folks there who have been patients, caregivers or doctors for twenty years and upwards, so you're goingto need to accept that many of them know a great deal more than the likes of you and me.

Anyway, I'd urge you to use the link Neil provided above and get Robin to issue you an invitation to join SP - I'm sure you'll get through the entry filters.

I hope this has given you a bit of the context of SP.

todd121
Posts: 436
Joined: Dec 2012

I have joined and started to read. I'm just not sure how much I'll be able to keep up. I have trouble even keeping up with reading all the posts here. Each post comes with information and questions that require other reading. It's easy for me to feel overwhelmed.

I listen to Jerry's CD each night while dosing off. I often start it over again if i get up dring the night before going back to sleep. The meditation has become a comfort to me.

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You may want to wait until you feel stronger - Neil, as a one-man-band, is capable of overwhelming anyone and he's just getting into his stride.  He's currently summarising around 3,600 highly technical papers for us Smile

It's good to hear you're gaining a lot of benefit from Jerry's CD. Keep well (and watch that weight).

NanoSecond's picture
NanoSecond
Posts: 474
Joined: Oct 2012

Well I am just now finishing up on paper #5.  So, only 3,595 more to go.  Piece of cake.  No wait - I gave that up.  :(

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

No need to be a masochist Neil - I'm sure you could find a high-fat, low-carb piece of cake, e.g. from Cinegotek Corp.    

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