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braceyourself
08-09-2011, 08:54 AM
First of all, thanks for your many kind compliments about my video.

Golfnut mentioned a starting a thread for my video link, so I thought it would be great to have one for all of us to get our links out there. I know some of us have them in our signatures, but I've found it hard to keep track of those that I've seen. Plus, it sort of helps put a face to the names on here.

So if you have any links that share your scoliosis story, pictures, etc., please post them here!

braceyourself
08-09-2011, 08:58 AM
I know these two are in my signature, but my blog tells about everything I can think of from my diagnosis, to bracing, and finally to surgery, with information about what to expect and tips to make it easier. It basically has all the info that I wish I wouldíve had before surgery. http://scoliosis-braceyourself.blogspot.com/

My video pretty much summarizes my life with scoliosis and surgery, and shows how it hasnít stopped me from doing what I love. http://www.youtube.com/watch?v=8NG9hMohsU0

Some other extra sites Iím on include a spotlight interview as a scoliosis advocate: http://mychroniclife.com/2011/08/07/katie-vanderkooi-scoliosis-advocate-spotlight-interview/

There are also a couple little informational videos on living and staying active with joint pain where Iíve shared some of my thoughts. http://tv.wegohealth.com/channels/joint-pain/videos/16-staying-active-with-joint-pain

Of all of these sites, my blog and video are the ones I especially love to share with others.

Susie*Bee
08-09-2011, 05:40 PM
Hi Katie! I don't have much-- just some pictures that show me at the hospital (and a few others) and my x-rays, and they are in my signature. I sure have enjoyed your blog! We share(d) the same surgeon, but now he is working exclusively at Shriner's and not at Rush anymore. Today would have been my appointment with him at Rush. Instead, I saw his former partner, Dr. Christopher DeWald, and he is very nice too. Plus he says I am looking fine. :D (You know-- my back! specifically, my lower vertebrae are still fine!)

Sometime PM me and let me know where in Indiana you live-- maybe not too far from me!

JenniferG
08-09-2011, 05:48 PM
I don't have much either, just what's in my signature. If anyone had pointed a camera at me in hospital, I'd have dived under the covers. But I must say, you looked gorgeous Katie!

golfnut
08-10-2011, 06:53 AM
http://thecrookedtruth.blogspot.com/2007/01/were-here.html



http://www.scoliosisthejourney.com/


http://nancyssurgery.blogspot.com/2010_08_01_archive.html

sjmcphee
10-11-2011, 12:21 AM
I have a couple of websites for scoliosis.

My first site for Scoliosis Books I finished about a month ago.
Well, it's mostly finished but I've still got a few little things to do.
http://scoliosisbooks.com/

My second site Celebrity Scoliosis I finished about a week ago.
It's really only a webpage as much as it's a website, but I can make it bigger later.
It took a while to collect and rewrite the small paragraphs of info.
There's 48 celebrities featured so far.
http://www.celebrityscoliosis.com/

I started building another site yesterday for Scoliosis Blogs.
The idea is to create another simple website, a place where we can find and share all our scoliosis blogs.
It will be basically 4 pages.
Featured Blogs, All scoliosis blogs, Info and tutorials to create a blog, and Submit a Blog.
http://www.scoliosisblogs.com/

This site might take me a few weeks to finish as well.
I'm just playing around in my spare time, and I've only done a little bit so far.

- Scott

Doreen1
10-11-2011, 08:13 AM
My work-in-progress blog is in my signature. :-)

Warmly,
Doreen

sjmcphee
10-11-2011, 10:16 AM
Hi Doreen,
I saw your blog and your x-ray.
That's quite a curve you have there.
I hope your surgery next year goes ok.
Why do they make you wait so long?

I'm assuming you're giving permission for me to add your blog to my site, but I'd really rather not assume anything though.
As far as adding website links to my websites, if I feel it's a good quality website and beneficial to scoliosis patients, then I don't feel I need to get permission to add a weblink.
Links to scoliosis patients personal blogs on the other hand are not something I feel I can just add to my website without permission.
Even though many people add their blogs in their signatures on this private forum, I can't just assume I have the right to use that information on my websites.
I would like to have some blogs to start adding to the website.
The Submit Your Blog feature is now working, so you can submit your blog info on the website.

I found a good video tutorial for Blogger which I added to the site, but can't find any good ones for tumblr and wordpress.com yet
I don't know that much about blogging. What types of blogs does everyone use?

From Scott

sjmcphee
10-16-2011, 04:07 AM
Hi Everyone,
I finished the basic framework for my website Scoliosis Blogs (http://www.scoliosisblogs.com/) today.
I've still got to create a logo for the site and do some styling on the "Submit Your Blog" page, but otherwise everything is finished and working properly.
All that's left now is to add some blogs to the site.
I'm going to build www.scoliosisforums.com this week.

- Scott

sjmcphee
10-16-2011, 05:21 PM
I have just partially completed http://www.scoliosisforums.com/.
I built it in 3hrs, in a bad mood. Maybe I'll build www.scoliosistv.com tomorrow.

sjmcphee
10-17-2011, 01:34 AM
There's no way in hell I can build scoliosistv.com in a day.
I'm going to have to spend days just watching youtube and vimeo scoliosis videos in order to review, categorize, and get the embed codes for them.
Anyone want some paid work?

Scoliosis Blogs has started getting requests to add blogs.
I've added 2 today, (thanks Katie) so if anyone else was wanting to add their blog but didn't want to be the first you can go to the site and see what your blog would look like on the site, and check how it links to your blog.
Also I decided to remove the text input box for adding your email when submitting your blog.
I decided that I have no need for peoples email addresses other than to send a confirmation that their blog has been posted.
So I won't be asking for your email, but that means you won't get an email confirmation either.

Doreen1
10-17-2011, 07:16 AM
Hi Doreen,
I saw your blog and your x-ray.
That's quite a curve you have there.
I hope your surgery next year goes ok.
Why do they make you wait so long?

I'm assuming you're giving permission for me to add your blog to my site, but I'd really rather not assume anything though.
As far as adding website links to my websites, if I feel it's a good quality website and beneficial to scoliosis patients, then I don't feel I need to get permission to add a weblink.
Links to scoliosis patients personal blogs on the other hand are not something I feel I can just add to my website without permission.
Even though many people add their blogs in their signatures on this private forum, I can't just assume I have the right to use that information on my websites.
I would like to have some blogs to start adding to the website.
The Submit Your Blog feature is now working, so you can submit your blog info on the website.

I found a good video tutorial for Blogger which I added to the site, but can't find any good ones for tumblr and wordpress.com yet
I don't know that much about blogging. What types of blogs does everyone use?

From Scott

Hi Scott,
Thank you for the courtesy. Yes, feel free to share my blog with your audience. I hope many people benefit from the resource you are creating.

Warmly,
Doreen

sjmcphee
10-17-2011, 03:23 PM
Hi Doreen,
Scoliosis Blogs is just one of my sites.
I also hope it becomes a valued resource.
Although there are other blog directory sites, there isn't one just for us.
I am grateful for the efforts scoliosis support organisations have made to create forums on the internet, but without being critical of their efforts I believe that the face of scoliosis on the internet is truly lacking.
I believe if the face of scoliosis on the internet would be improved, it would not only provide a better source / format for information, but also help create some standards, and make it more difficult for the people who would otherwise take advantage of scoliosis patients in a non-surgical environments. Not only that it would lead to better sources of fundraising for scoliosis as well.
In my country charities often use prize homes and car raffles in malls to generate money for their causes.
I'm not sure how you do it in the USA.
I'd like to see prize homes every 3 months in all the rich states of the USA + a car raffle in every mall to raise some real money for scoliosis.
Not thousands, millions.
To achieve this my plan is to create a ring of free sister sites that drastically improve the quality of free imformation on the internet.
IE - Scoliosis Network
Then I plan to create a subscription based scoliosis site which will cost between $5 and $10 per year.
What I envisage is a cross between a scoliosis textbook that updates itself unlike a book, and a private social networking site.
My subscription based site will have all the information of the smaller sites and more.
Also I plan to have most of the information on the site directly in video format which might cost a lot of money to have these videos made.
With the money raised from site subscription I will use to continually improve the quality of the site and begin to work into other areas that can raise money for scoliosis as previously mentioned.
It's often spoken about on this forum how research money is spent on surgical improvements and things that only make more money.
Well I plan to use our reasearch money to investigate all the things conventional research isn't interested in.
Why am I doing this?
8 years ago I put forward some research for scoliosis, and no-one would support me - certainly not any member of this forum, staff or otherwise.
They choose to sit silent instead.
So I have to do it myself.

In fact I really shouldn't be making my plans public as I believe certain people including possibly even the NSF itself might try to derail my plans.
I have already been told by the moderators of this forum to take my scoliosis website links off my signature.
I complied, and would normally protest on principle - especially since by forcing me to remove the links I believe the moderator is actually doing a disservice to scoliosis patients.
But I did not come to this forum with an intention of using it to promote my sites so I removed the links in order to keep the peace.
I will point out however that this is the kind of backwards shit I've come to expect from some people within scoliosis circles and why I am distrusting of others in my plan to improve the quality of scoliosis on the internet.

Now that they know what I am doing I think they will do whatever they can to stop me.
And by the way, they only know about maybe one third of the quality scoliosis domain names I own.

Finally someone comes along that can improve the face of scoliosis on the internet.
You watch them try to stop me.
Let's see if I am right.

The simple fact is the only way they can stop me is to steal my ideas and do it for themselves.
In any case I'll still be responsible for impoving the quality of scoliosis on the internet, because they will be doing it BECAUSE of me.
Since when have they ever cared about the quality of scoliosis on the internet?
When did they ever support me?

All I ever wanted was to have my research ideas investigated but they ignored me, not supported me.
Patient organisation my arse.
From what I can work out the so called leader of this organisation would prefer to hang out with surgeons anyway.
I've never seen him post, and he never even took the time to respond to my emails, all those years ago.
I have no allegiance to the NSF, I have no reason to think that they are interested in improving the quality of scoliosis of the internet or investigating my research ideas, or putting forward a new type of format that can raise the money to do all of these things.

Why would they help me? I'm not an American.

I'll do it myself - 1 website and 1 webpage at a time.

Why? Because I can - and why? Because it needs to be done.

I wont shy away from the hard things like others have, including difficult scoliosis research.

-Scott

sjmcphee
10-24-2011, 09:38 PM
I started building http://www.scoliosisevents.com/ today.
This site might take me a week to finish, I'm playing around with some new stuff.

sjmcphee
10-25-2011, 09:07 AM
Scoliosis Events is mostly finished, but I'm going to have to delete the entire site and rebuild it again tomorrow because I'm a bit suss on the install of the joomla core. It seems a little glitchy - its not really anything a user would pick up on though - everything works ok, I just don't like it. Otherwise I am quite pleased with the way this site is starting to turn out. It's probably the most complicated scoliosis site I've built so far in as far as functionality is concerned. This site requires registration and log-in to add new events and post comments for existing events. It also has a calendar and twitter feed. These aren't really a big deal but none of my other scoliosis sites have this functionality yet. I've got a bit of an issue right now in that all events display registration info, which is a bit of a pain and I've got to get it fixed, because I added a couple of events just to test functionality - the next SRS meeting and IMAST meeting and it has buttons which automatically appear in order to register for the meetings which wont apply on my site. These buttons need to be links to the meeting websites instead. I've got the developers of this component looking at a fix for this issue for me. If I don't get a fix for this issue in the next day or so - I'll remove those listings until a suitable fix is found. I don't particularly want to upset the SRS, but I doubt any medical professional will attempt to register for these events using my site anyway.
- Scott

sjmcphee
04-12-2012, 06:52 PM
Hi Everyone,
I thought I'd share a scoliosis link with you - this is like my secret favourite link that nobody else knows about.
http://www.mashpedia.com/scoliosis
This site used to also display ALL latest twitter tweets for scoliosis and ALL latest facebook comments for scoliosis as well.
But it doesnt seem to display them anymore, maybe they are there somewhere and I can't find them.

Anyhow, I also played around and made http://www.scoliosisdirectory.com yesterday.
I'll have to add some more links though, and I'm a little concerned about adding links like fixscoliosis.com and CLEAR -
I think they should be on the directory as with anything else scoliosis related, but maybe I need to provide some information pages about what to expect from these kinds of sites.
-Scott