An sent Today at 4:47 AM
The CRF posted the first doctor recommendation on social media
An sent Today at 4:47 AM
What are you going to do with our data?
An sent Today at 4:47 AM
The red light list idea was taken from our intellectual capital ideas and replicated
An sent Today at 4:47 AM
We provided what you do now first, so are well established in that already. The PIA invited us to launch our education at the next conference, so that will be our focus
An sent Today at 4:47 AM
I do wish to help your understanding but am inundated in 4 creative projects right now, one for the Olympics, but we need to figure some things out
An sent Today at 4:47 AM
The education currently provided in Support is concerning, a concern I already raised with the head of the PIA. But we can only address it with launching full education which is what we are working on
An sent Today at 4:55 AM
The adult group admins says they had too many run ins with cf support they do not want us to provide access. Our adm and other brace groups only allow actual,users doing the therapy not those interested only from the beginning because we did these for the orthotists to follow their outcomes online
An sent Today at 5:02 AM
We do not want replication of these outcomes anywhere else as the CRF already provide these both to the orthotic companies who are present themselves in each brace group we have and we use this data to support research efforts globally.
An sent Today at 5:02 AM
I did approve you for the Oregon group
An sent Today at 5:02 AM
Please do not replicate our efforts anywhere that is a prerequisite to participate in our groups
5:21 AM
You sent Today at 5:21 AM
Ok, I’m super confused…
Why do you own the Oregon group? Is it meant to be a special group for this organization for Oregon? Because it should have a more accurately descriptive name if so. If not, I believe someone from Oregon should be running any general local group.
I’m all kinds of confused over the data thing and the thing about cf support group. What’s the problem? You don’t want people in that group to be in this group?
You can now message and call each other and see info like Active Status and when you've read messages.
An sent Today at 5:26 AM
The state groups all 50 of them and the country groups we have is firstly to provide and collect feedback on what is available in each state with regards to treatment and a support group for our members in those states. It is subgroups of the CRF. We will take anyone who gets treated in that state, but we are not interested in folks that takes data from our groups to publish on their website or store pages or who replicates our intellectual capital from our groups. The data the CRF owns in their groups belongs to the CRF. So far Jill Harold replicates info, the Clubfoot Store took info that did nothing belong to them, and the Doctor review list was intellectual capital taken from the CRF. And although ideas can be taken, the replication of our group polls cannot.
You sent Today at 5:29 AM
Is it very important to keep so private? Idk what kind of intellectual data you even have so I’m trying to understand.
Not sharing info with people who aren’t in your group or members? Is that helpful for most folks?
Honestly I’m really just trying to understand the secrecy. Is sharing information bad?
An sent Today at 5:34 AM
Ok the CRF have 166 groups more or less
An sent Today at 5:34 AM
Most of these groups were created 2013/2014 when we launched the second CRF Closed group
An sent Today at 5:34 AM
Pretty soon physicians joined us and urged us to become a 501c
An sent Today at 5:34 AM
Which we did
An sent Today at 5:34 AM
I tried to participate as a parent and share our insight but was removed as a parent each time...I mean I was told I cannot link a research paper in CF Support to prove my point by Mary Lynch
An sent Today at 5:34 AM
I was removed when I asked another advocate for her source after she posted false info mind you
An sent Today at 5:34 AM
I am not allowed to participate
An sent Today at 5:34 AM
And I wondered why the hell not, but the admin is not willing to explain why
You sent Today at 5:34 AM
Are you talking about like copyright stuff? People not linking back to your content properly or not attributing properly?
An sent Today at 5:35 AM
Yes I am referring to that, copyright we spelled out in the CRF rules since 2014 basically because the researchers requested those ground rules
An sent Today at 5:35 AM
They might share info that is not published yet
An sent Today at 5:35 AM
I give you three guesses who spat on that
You sent Today at 5:35 AM
See because I’m a web developer and I know the rules. Most people who use website builders like wix and square space haven’t the first clue why the rules are. You can’t just use people’s stuff. Also, google will see that and penalize you.
An sent Today at 5:35 AM
Who came and told us on the CRF she can do whatever she wants
You sent Today at 5:36 AM
No idea? Mary?
An sent Today at 5:36 AM
The Clubfoot store basically replicated a CRF members blog
An sent Today at 5:36 AM
When we told her no you can’t do that, she now goes around smearing us, even in writing.
An sent Today at 5:36 AM
We existed before she opened her store
You sent Today at 5:37 AM
I haven’t even seen that lately. I’m still working on making a page of links to other resources. I have like 4… lol
An sent Today at 5:38 AM
I think you are pretty unaware of all the other stuff, I do not blame you in any way
An sent Today at 5:38 AM
But just know that there are issues and even issues with mutual respect
You sent Today at 5:39 AM
What’s she sell? Geez, what a mess. This all sounds very unpleasant. My online friends and I ran the PCOSA (501c3) for years in the late 90’s and had no issues with intellectual property or anything like you describe.
An sent Today at 5:39 AM
I try my best to always communicate in a respectful way. I don’t think I have ever not cited the literature ever. The PIA says we have the best education out there. But parents don’t believe what we post? Now I find it strange that parents don’t be,urge it since we have lost every bit of literature that exists the past 9 years
An sent Today at 5:42 AM
I honestly did not know about Pisa
An sent Today at 5:42 AM
Pcosa
An sent Today at 5:42 AM
Or it’s existence and we data mined extensively to see what is available re education in 2011
An sent Today at 5:42 AM
Most websites were empty, created but no content even NORD did not exist
An sent Today at 5:42 AM
We did not enter into this effort blindly
An sent Today at 5:42 AM
Notty Bumbomstarted his adult blog in the nineties as a pedorthist
An sent Today at 5:42 AM
We took over his effort
An sent Today at 5:42 AM
He published literature on his blog and he has passed on his legacy basically to us
An sent Today at 5:42 AM
He made shoes for clubfoot adults
You sent Today at 5:42 AM
Well I do think it’s time for some focus to change and explore something other than just “does it work over and over again”. But the data we have also excludes non-idiopathic most the time. So that’s something to start focusing on, for sure.
An sent Today at 5:47 AM
In California
An sent Today at 5:47 AM
When we launch our new training sometime soon you will be surprised as to the detail provided
An sent Today at 5:47 AM
It is designed for physicians
An sent Today at 5:47 AM
And the PIA invited us to present it once done at the next conference
An sent Today at 5:47 AM
Our groups are closed, as we do not expose a members health info to the public upon their requests
An sent Today at 5:47 AM
We asked our members how they wish to participate since some of them are researchers and universities
An sent Today at 5:47 AM
So it is closed groups, not public groups
An sent Today at 5:47 AM
Everything was done in the open and the physicians knows us from the beginning because I brought the concept of under correction to social media first
An sent Today at 5:47 AM
We created the concept of bracing beyond 5 to doctors and social media first due to the growth spurts
An sent Today at 5:47 AM
We posted first about the existence of overseas braces, sourced it and posted it
You sent Today at 5:48 AM
Ah, well the PCOSA… well the founder decided she wanted to move operations to Colorado so myself, the exec director, and two other paid staff stopped doing it. And I was on baby #3 with clubfoot so I didn’t even care. Then I found nosurgery yahoo group and took up helping people with bracing. Long ago, the original original folx. All our kids are adults now… or almost adults.
An sent Today at 5:48 AM
Who was the founder of that?
An sent Today at 5:48 AM
And does it still exist ?
You sent Today at 5:49 AM
I feel like it was Jennifer travel loan, but I can’t be sure. They killed all our content.
You sent Today at 5:49 AM
We had soooo much content that was even searchable.
An sent Today at 5:50 AM
The the first adult teens group was formed in 2000 but in 2008 they switched to the old adult group everyone sees today
An sent Today at 5:50 AM
I have never heard of that name before
You sent Today at 5:50 AM
Lots of pics of dr Ponseti because so many of our kids went there
An sent Today at 5:50 AM
We did full data mining in 2011 of all websites, and social media and there was zero to peruse
You sent Today at 5:50 AM
Well, it was there. Started in 2000 I think
An sent Today at 5:53 AM
Only the Ponseti website that had 3 pages
An sent Today at 5:53 AM
Either way the data exploded the past 29 years and C19 is forcing changes to the system
An sent Today at 5:53 AM
There will always be resistance to changes also
An sent Today at 5:53 AM
I know there is more new braces on the way that is going to rock the world for many
An sent Today at 5:53 AM
Some of it is suggestions we made to adapt products
An sent Today at 5:53 AM
My goal is to get better therapies, more long term approaches into the system for the sake of my son and other children
You sent Today at 5:54 AM
It was on yahoo groups. It was an email list. Idk your age but in the 90’s support was via email only. Or bulletin boards. Amd forums finally came around, then yahoo took up the trend and made the first iteration of “groups” . But it still functioned like a listserve up till end of last year when they turned that off. I was still getting emails now and again for a while. I sent email to my private group last winter (2019-2020) and a bunch of people responded.
You sent Today at 5:58 AM
If you data mined you must have found my tips pdf then. Because I actually lost my copy and found it on a really old site. But I wrote it. Published in 2005.
An organization once called me and asked if they could put it in a cd of health info they were providing for underdeveloped countries that had no internet.
I’m like, of course! Please share! I didn’t really understand why they asked but I knew less about copyrighting back then. I only did it because people needed it and I was typing it all out again and again every day and had been for years.
An sent Today at 6:02 AM
We did search yahoo since I am definitely as old as you and knew where to search. We also went through all the rollbacks of fb and all the groups there. The blogs and hospital websites and all university sites were searched. Our recommendations to universities and researchers comes from our groups and therefore it’s intellectual capital we provide to improve the quality of the projects, to improve their interest in certain subjects to research and it provides evidence to support applications for grants for such projects. More money means more research for CTev that all benefits from. Currently I am helping the Universities of Scotland, Singapore, a Kenyan student to get training, two local non profits in Tx and the PIA with i fo on the DTKafo and ADM braces. Our data comes mostly from the adult source, and no I never saw your tips document. When I first posted the bracing progression tips in 2013 dr Herzenberg said and a Dobbs said that is the first brace profession document they ever saw
You sent Today at 6:03 AM
When I talked to Danika at Stanford for the study about talking to your kid about CF I mentioned nosurgery4clubfoot and she's like "oh, you were part of that original group of parents?" And I think there was a study done (I found it the other day) on the groups and their impact. But that was before I got there in 2003. The study was published in 03. There was only a handful of docs who could do it and lots of modifications and lots and lots of surgery. Many went to Dobbs and Ponseti.
You sent Today at 6:04 AM
Well, that's not accurate. Or maybe they didn't see it? idk, it's been there for a long time.
I hope you don't think I'm lying... ??
An sent Today at 6:05 AM
Actually Notty Bumbo’s document on any form of shoe and Prosthetics is the oldest document Aside from what is mentioned in literature which is mostly Dennis Brown, French and Ponseti bars.
An sent Today at 6:05 AM
Literature is ultimately the oldest
You sent Today at 6:05 AM
There's two names on the document, Naomi Powell was my editor and publisher since I didn't have a full version of Acrobat and she did. lol
An sent Today at 6:07 AM
But our group published the first global list of products and feedback on each product on the CRF since 2013. There was no such document available for orthotists and parents that included a breakdown of all products but moreover a progression list. Herzenberg and Dobbs since adopted our brace progression list which lists them from which ones to go to next if the previous one cannot be used based on the syndromes etc
An sent Today at 6:09 AM
I don’t think you are lying at all btw
An sent Today at 6:09 AM
I think it’s the truth, but I don’t think it’s the oldest. The pedorthists and orthotists were first amongst them and we did find that.
An sent Today at 6:09 AM
Either way education needs to change and we are strongly busy with that
An sent Today at 6:09 AM
It should be done soon, recorded and presented by physicians
You sent Today at 6:09 AM
Well I never said it was the oldest. I'm in no competition with this... All I want is to help people not have babies with sores.
An sent Today at 6:10 AM
We provided the research and the data
An sent Today at 6:10 AM
Treatments will keep changing in future so everything will be new once again
You sent Today at 6:11 AM
this is where I eventually found it again, but I'm getting a server error on it now. It was an old way to make a website for free called Tripod. Someone made it and it was probably the only site with decent information at the time and the gal who ran it put my pdf up.
https://www.widernet.org/portals/index.php?formatI...
widernet.org
You sent Today at 6:12 AM
don't click on it, it's just spilling a 500 server error
You sent Today at 6:12 AM
but that's where it was. I'm glad I got it off in time!
An sent Today at 6:14 AM
I am just trying to keep up and are helping 4 projects right now, meaning attending their meetings to provide perspective on literature to these projects. And I try and help parents in between when they don’t realize what they are facing. The issue is all the parents with no financial resources to get the therapies these kids need.
An sent Today at 6:14 AM
Glad you did!
You sent Today at 6:15 AM
I have it hosted on a couple sites now. It's on my professional site as well as the nosurgery one I'm working on. I'm in the process of updating it for current info with new braces and whatnot but I think it's just going to stay the way it is and I'll do it all on the website. I wasn't a web dev back then, I can do whatever I like now.
An sent Today at 6:17 AM
Our focus is more the genetics and passing those research gaps on the researchers at the moment. Don’t worry braces and casting will stay a part of it, that won’t change for a long time still
An sent Today at 6:17 AM
But new therapies will,be developed and the braces and casting might fall away once more effective therapies are in place
An sent Today at 6:17 AM
50 years about
An sent Today at 6:17 AM
Everyone gets anxious when we mention these but there has been gene therapies developed since the 2000’s
An sent Today at 6:17 AM
It’s nothing new, it is just professing
An sent Today at 6:17 AM
Progressing
An sent Today at 6:17 AM
Positional ctev does not fall under these advances btw
You sent Today at 6:17 AM
Well right now all I'm interested in is providing mostly bracing help since that was my focus before. But also just info in a way that is comprehensive. all the sites have about the same info out there and there's a lot of sites that have no attention, aren't mobile responsive, built by housewives... etc. So that's what I'm about now. Also some way to get people to the right docs.
An sent Today at 6:17 AM
It’s not necessary
You sent Today at 6:18 AM
Are you saying that anything that's non-idopathic is positional?
An sent Today at 6:18 AM
No
An sent Today at 6:18 AM
Anything that’s non genetic is positional
You sent Today at 6:19 AM
non-genetic then
You sent Today at 6:20 AM
I see. hmmm so, not very important then?
An sent Today at 6:21 AM
If it was caused by structural issues no genetic therapy will fit that
An sent Today at 6:21 AM
There will always be more than one direction of therapies needed in the future
You sent Today at 6:22 AM
who would think that genetic therapy would fix non-genetic cf? That makes zero sense anyway.
An sent Today at 6:22 AM
Exactly so for those incidences a different approach is needed
You sent Today at 6:24 AM
Well there's a lot of us out here with non-genetic cf. It's not all positional. I'm not a fan of that term anyway, it's overused and it makes some kids wait too long to get treated.
An sent Today at 6:26 AM
Agree
An sent Today at 6:26 AM
However we discovered genetic positional
An sent Today at 6:26 AM
That is a whole other group of positional
An sent Today at 6:26 AM
Bracing fails to prevent the MA in those instances and is not ctev either
An sent Today at 6:26 AM
So within the positional diagnosis there is further diagnosis needed
You sent Today at 6:27 AM
It might be best to not call it that though. I think that's where people get upset. It comes across as if it's not considered to be real.
An sent Today at 6:34 AM
There is no name defined yet
An sent Today at 6:34 AM
We are creating names now
An sent Today at 6:34 AM
Fir which a global consensus lit effort has the be done, we’re working on those projects currently
An sent Today at 6:34 AM
Doctors already said they will do those efforts for us and set it up
An sent Today at 6:34 AM
Terminology as a whole is a mess
An sent Today at 6:34 AM
Hence the confusions that exist
An sent Today at 6:34 AM
Our brace document has been drafted and approved by the board and is a breakdown of products in more detail for its pros and cons. Mainly written for orthotist companies like Hanger but it will be useful to parents also
An sent Today at 6:34 AM
Many nurses and members from varied countries did this one
You sent Today at 6:39 AM
Well this is my effort to help parents with the brace, but I'm still working on separating the text for the markell shoes into good text for the Mitchells. But I was able to meet up with a local mom and take some pictures (I doubled up with it for my final project for photography class).
http://nosurgery4clubfoot.com/donfab
XMA Header Image
How to Put the FAB/BNB On
nosurgery4clubfoot.com
An sent Today at 6:39 AM
It will not be the same as yours
You sent Today at 6:39 AM
below those pics I pasted in the text from the PDF so that's gotta change.
You sent Today at 6:40 AM
This is the original PDF. The only thing I changed was my email and link to yahoo groups.
nosurgery4clubfoot.com/fab-tips.pdf
XMA Header Image
Error - Page Not Found
nosurgery4clubfoot.com
You sent Today at 6:41 AM
hmmm, sec. I must have typed that wrong.
ight, I changed the alias to markell-tips. duh
You sent Today at 6:45 AM
I've been pasting in study links for days now... there's over 170 so far. Categorized and listed by date. I have probalby 200 tabs open in my browser windows atm because every time I open a link, there's 10-20 citations and related papers to check out, and then each of those has 10-20... so it's a rabbit hole city these papers!!
You sent Today at 6:45 AM
https://nosurgery4clubfoot.com/studies
XMA Header Image
Clubfoot Studies
nosurgery4clubfoot.com
You sent Today at 6:48 AM
I'm also working on the videos page and a whole bunch of others that are hidden because they don't have good content yet. And I need to do some code work on it as well. A few things aren't quite right on mobile. but the site is simply about information. I don't want money or notoriety, I actually want more help with the content. I have a few people who might but they all have little kids so who knows? lol
An sent Today at 6:49 AM
The GCi already posts these studies though
You sent Today at 6:49 AM
Most parents don't know what a GCIis
You sent Today at 6:50 AM
this is for parents. To find easily. When they are freaking out over a diagnosis. So they can get some solid info. I don't care what the study says, I'm just putting it all out there.
You sent Today at 6:51 AM
I'm not sure what this GCi is either, TBH.
An sent Today at 6:52 AM
Global Clubfoot Initiave, managed by PIA
You sent Today at 6:53 AM
ah, ok. Well I will check their page. If it's not sorted by category I'll continue. I think that's helpful for parents.
You sent Today at 6:53 AM
Also, I'm learning a lot. There's been a lot of work done since I stopped thinking about CF full time. lol
An sent Today at 7:01 AM
We sorted it on social media per category in the CRF as we discuss relapse etc
An sent Today at 7:01 AM
It has been sorted that way before
You sent Today at 7:04 AM
social media unfortunately is not searchable
An sent Today at 7:04 AM
Why do you say that?
You sent Today at 7:04 AM
You have to have a website for google to even look at it. It's a surprise google will even search people's names on social media. but that's as far as it'll go. nothing indexed.
An sent Today at 7:05 AM
Google lists the pages and groups
An sent Today at 7:05 AM
Or at least maybe they were blocked now but they used to
You sent Today at 7:05 AM
but not the content. That's same as a person to google
They def do
An sent Today at 7:16 AM
Google has the name
An sent Today at 7:16 AM
I wish I am allowed to participate as a parent though but people are to,d to block me on cf support
An sent Today at 7:16 AM
And I can never place a piece of lit with my posts to proof what we sa
right, but not everyone uses social media, which is why people still have websites. hehe... That's my biz. search engine optimization (SEO) is big business. People search google before they search social media.
An Van Rooyen
An sent Today at 7:17 AM
They def do
An sent Today at 7:17 AM
Google has the name
An sent Today at 7:17 AM
I wish I am allowed to participate as a parent though but people are to,d to block me on cf support
An sent Today at 7:17 AM
And I can never place a piece of lit with my posts to proof what we say
An sent Today at 7:17 AM
We are therefore blocked by parents as parents of children with ctev, it’s crazy
You sent Today at 7:18 AM
I know nothing about it.
An Van Rooyen
An sent Today at 7:20 AM
You are not the admin there so you won’t know
You sent Today at 7:22 AM
The only literature I've seen you post are the same studies I found that said more consistency needs to be done in the future. Unfortunately none of them say all the papers are wrong, they just say needs to be standardized for better data. And no study I've seen where Morcuende says he has a 50% relapse rate. BUT lots of studies with an introduction where he says it's "reported" up to that high. That's not the same as him saying it though. So for those things I do disagree with at least the gist of our last public conversation.
We have those studies
An sent Today at 7:27 AM
It is part of our relapse document published with all the relapse studies soon. You will find it later on the website
An sent Today at 7:27 AM
We look at all literature in co morbid as well not just ctev
An sent Today at 7:27 AM
The scope of what we consider the highest rate compared with the lowest rate and the middle rates are concluded in this document
An sent Today at 7:27 AM
I don’t have to proof it, researchers already received a diagram we designed on it
An sent Today at 7:27 AM
We verifie the tendon transfer rates at hospitals as a additional source of the possibility
The diagram is in the Ed we launch now for docs do no I cannot give it to you u til that’s out with the calculation we made from all the literature
An sent Today at 7:28 AM
We did not use the highest or the lowest rate to make the calculation btw
You sent Today at 7:29 AM
these are the ones I'm referring to.
A systematic review of reported outcomes following Ponseti correction of idiopathic club foot July 2020, Yael Gelfer, Katie Hughes, Andreas Fontalis, Shlomo Wientroub, Deborah M Eastwood
Relapse Rates in Patients with Clubfoot Treated Using the Ponseti Method Increase with Time: A Systematic Review May 2019 - Hannah M. Thomas, Sophia Sangiorgio, Edward Ebramzadeh, Lewis Zionts
The Ponseti method in children with clubfoot after walking age – Systematic review and metanalysis of observational studies November 2018 - Gabriel Ferraz Ferreira, Kelly Cristina Stéfani, Davi de Podestá Haje, Monica Paschoal Nogueira
An Van Rooyen
An sent Today at 7:30 AM
I k is those ones yes there are more than that
An sent Today at 7:30 AM
Know
You sent Today at 7:30 AM
I just ran across them while doing the page.
You sent Today at 7:30 AM
it's chance that I even found them.
An Van Rooyen
An sent Today at 7:33 AM
We publish these studies in the CRF as they come out
An sent Today at 7:33 AM
Then it’s discussed for its role in the greater picture in front of physicians
An sent Today at 7:33 AM
As I said the PIA says we are not wrong and will tell us if we are
An sent Today at 7:33 AM
They are present there
You sent Today at 7:34 AM
What is this CRF? I'm confused, I honestly just clicked to join a whole bunch of lists last night, I had no idea you were any part of any of them so all this is new to me.
An Van Rooyen
An sent Today at 7:36 AM
The Clubfoot Research Forum/Foundation (CRF)
An sent Today at 7:36 AM
A registered 501c
You sent Today at 7:37 AM
so on your website? what's the url?
You sent Today at 7:37 AM
It was Theresa McLoughlin who started the Nosurgery yahoo group. Not Jennifer. Theresa is in Iowa City and her kid was a few years older than mine. Born in 1998 which would make her same age as my oldest.
You sent Yesterday at 9:23 AM
I have an excel file that would actually be the very first red/green list, lol. But it's more of a green list and there's only 60 entries, some for the same doc. It was actually a list of parents who were willing to talk to other parents, so not really a doc listing. But it does list everyone's docs.
You sent Yesterday at 9:25 AM
Anyway, we're all old now and we have adult children. So I suppose if you want me to try to contact these people so you can interview them about their adult children, I'm happy to do so. Technically I could probably give you the list because everyone on it was agreeing to talk to other parents about CF, which was why I made the list. But I think it'd better, this day and age for me to do the contacting first.
Wed 10:35 PM
You sent Yesterday at 10:35 PM
I found it! I just needed the correct url. It is in the PDF actually, which if you're interested at the end has some links to the Ponseti info websites that were available at the time. But this is the site that I found my PDF on a few years back, when I had to download it because I'd lost my hard drive.
https://members.tripod.com/ponseti_links-ivil/
You sent Yesterday at 10:36 PM
Insofar as scraping the web for info, you really should have found this site. It's very old.
You sent Yesterday at 10:38 PM
Towards the bottom, right above the link for the Dobbs brace is the link to my pdf. That is the real original version. You can tell because it has my quest.net email addy on it. I can't get to that email anymore. That's where the email I got from Dr. Ponseti was. I'm sad that I don't have it now.
https://members.tripod.com/ponseti_links-ivil/id9....
You sent Yesterday at 10:39 PM
Towards the bottom, right above the link for the Dobbs brace is the link to my pdf. That is the real original version. You can tell because it has my quest.net email addy on it. I can't get to that email anymore. That's where the email I got from Dr. Ponseti was. I'm sad that I don't have it now.
https://members.tripod.com/ponseti_links-ivil/id9....
You sent Yesterday at 10:39 PM
Towards the bottom, right above the link for the Dobbs brace is the link to my pdf. That is the real original version. You can tell because it has my quest.net email addy on it. I can't get to that email anymore. That's where the email I got from Dr. Ponseti was. I'm sad that I don't have it now.
quest.net
You sent Yesterday at 10:39 PM
https://members.tripod.com/ponseti_links-ivil/id9....
You sent Yesterday at 10:40 PM
oh so weird. So when I try to send you the link to the inner page with the link to my pdf it fails. Here is the url, you'll just need to put it back together.
https://members.tripod.com/ponseti_links-ivil/id9 dot html
You sent Yesterday at 10:41 PM
oh so weird. So when I try to send you the link to the inner page with the link to my pdf it fails. Here is the url, you'll just need to put it back together.
https://members.tripod.com / ponseti_links-ivil / id9 dot html
You sent Yesterday at 10:41 PM
oh so weird. So when I try to send you the link to the inner page with the link to my pdf it fails. Here is the url, you'll just need to put it back together.
https:// members.tripod dot com / ponseti_links-ivil / id9 dot html
You sent Yesterday at 10:42 PM
um... now all the times I tried to send it have gone through? wtf? oh well, it's on the bracing page on that website, not hard to find it's a top level menu.
Wed 10:58 PM
You sent Yesterday at 10:58 PM
So, I'm looking at the GHI site and all I can find are a few studies and some videos and a few pdfs. This is the page I'm looking at. Is there some other spot on this site that has a comprehensive listing of studies for CF?
https://global-help.org/category/specialties/ped-o...
XMA Header Image
Foot Archives - Global HELP
global-help.org
1:30 AM
An sent Today at 1:30 AM
That is not the org I gave you above?
An sent Today at 1:32 AM
You sent Today at 1:33 AM
You said global help, is that not the same?
You sent Today at 1:34 AM
oh, ok global clubfoot
You sent Today at 1:34 AM
not global help. my bad.
An sent Today at 1:35 AM
Nope I typed GCI see above. Although they also lie about their literature efforts, it started two years ago, as we witnessed it, they now say 2009, and if I go back far enough with our screen shots I would have a copy of the first posting. they all lie frequently as is evidenced in the goal to free the world of clubfoot by 2030, that is literally their statement. They cannot free the world of clubfoot by that date with the current treatment that exists.
You sent Today at 1:35 AM
what's the url for the articles?
An sent Today at 1:36 AM
It is now their newsletter
An sent Today at 1:36 AM
https://globalclubfoot.com/wp-content/uploads/2020...
globalclubfoot.com
globalclubfoot.com
You sent Today at 1:37 AM
omg so annoying when people do stupid shit like put all their info into a damn blog or newsletter. So stupid!!!
You sent Today at 1:37 AM
Just make pages and sub pages so google can crawl your site.
You sent Today at 1:37 AM
ARGH!
You sent Today at 1:38 AM
sorry, my web dev lion just came out...
An sent Today at 1:38 AM
So when this website opened, the names of the initial founding members and non profits were relevant to steps
You sent Today at 1:39 AM
I don't understand that sentence.
You sent Today at 1:39 AM
AND it's a pdf? Again, stupid stupid stupid!
An sent Today at 1:40 AM
Xbtw why on earth are you awake!
An sent Today at 1:40 AM
Oh ‘limited’
You sent Today at 1:40 AM
my schedule is super borked at the moment.
An sent Today at 1:40 AM
Steps saw our topics and they replicated the education effort we do, we also could not find this in 2009
You sent Today at 1:41 AM
I have a meeting with a client at 1-3 tomorrow and that's my usual sleep time the past week or so. Sometimes I get back on schedule then I can't sleep all night and it goes back to stupid.
An sent Today at 1:41 AM
Heck the Ponseti website backdated their stuff a year ago
You sent Today at 1:41 AM
Steps? that sounds familiar.
An sent Today at 1:41 AM
We took pics of that also
An sent Today at 1:41 AM
Steps is a mess (not my words)
You sent Today at 1:42 AM
Why does all this "we were first" stuff even matter? I'm sorry but I don't understand. Are there prizes for being the first?
An sent Today at 1:42 AM
First gives you copyrights, so every one of them claims to be ‘first’
You sent Today at 1:43 AM
Did you look at that tripod page? so old! I'm gonna try to find the gal who owns it. I'm really surprised it's still up. free website for 20 years is rare.
An sent Today at 1:43 AM
It’s silly really
An sent Today at 1:43 AM
Because all everyone owns is the way they said it.
You sent Today at 1:43 AM
Yeah, well I would be upset if someone took my material and passed it off as their own, but not my concepts.
An sent Today at 1:43 AM
Phrasing
You sent Today at 1:44 AM
I was the first to describe to bend the knee, dorsiflex the foot, etc. Probably the one thing that every parent should be doing when they put the shoes on. Any shoe.
You sent Today at 1:44 AM
but I don't care if others say it or even put it up in publications. It's a good thing for everyone to know.
You sent Today at 1:46 AM
of course, no plagiarism. that's not cool. Not unless you cite your source. Which I always do. You have to do that. Even if you use a picture from other site, you need to credit the source.
You sent Today at 1:46 AM
So if I ever paste words, I always make sure to quote it and link to the source. Properly, with a title and alt attribute.
You sent Today at 1:48 AM
Images are also important to do that with. My chiropractor got fined $600 like three times because he used someone else's image on his website. I told him... he's like it's fine! And next thing you know he's bitching because they caught him. Three times.
An sent Today at 1:50 AM
We use only images we have written permission for
An sent Today at 1:50 AM
Our analysis of literature is unique because we use a 5 tiered comparison system
An sent Today at 1:50 AM
Pooling of resources
An sent Today at 1:50 AM
And that we were the first to ever do, no doctor were able to do it and if they did they should have provided that education long before as it would have changed what these folks above talk about
You sent Today at 1:51 AM
but, back to bitching about that PDF. Lol... so take this and put it in your website pocket:
Google can NOT do anything with an image. That is why Flash isn't used anymore, Google can't read photos or graphics. It can only read words. So every time you put an image up, you must insert also a title and alt attribute. The alt is used for screen readers for blind folk. The title, well it's a title. Also for links. If you put a link in, make sure to give it a title. It'll improve your SEO a lot, especially with images. If you title the image, google will know what the image actually is. Otherwise it has no clue.
You sent Today at 1:53 AM
Same with that PDF. Google isn't going to index it. It'll index the link to it but it can't crawl it any further. Even if it is text. It's not text that browsers can read and that's what google reads.
An sent Today at 1:53 AM
Because of the new suggestions we are publishing now, we have a lot of changes to do, hence we stripped down the site to make space for all the new pubs we will be featuring. These pubs contain information not available in regular literature, that lit still has to confirm and catch up to
An sent Today at 1:54 AM
Maybe it’s a good thing Google can’t crawl it
An sent Today at 1:54 AM
Google will become just too smart lol, machine learning
You sent Today at 1:54 AM
Also, I already have more links to papers than that PDF does. So, I will continue the effort for my site. thanks for telling me though! I might find some papers I don't have in there.
You sent Today at 1:54 AM
Well it's just a search engine, that spits out text but ya never know...
You sent Today at 1:55 AM
We want google and all the other search engines such as Bing and Yahoo, etc. to be able to read our websites. So people can find what we put on the site. Otherwise, there's little reason to do so.
You sent Today at 1:55 AM
little reason to even have a website I mean.
An sent Today at 1:57 AM
I can see how they replicated the references we put up since 2011. They never had those in the past, some of it I had to dig up with three years of searching. So I know how accessible some of those are and we’re not at the same time.
An sent Today at 1:57 AM
Some of those papers were not found on PubMed and the regular sources they now cite
An sent Today at 1:57 AM
I know how much effort it took us, drs tell us they did not even know which ones existed, even Dobbs
An sent Today at 1:57 AM
I send the PIA researchers literature for their projects and pubs
You sent Today at 1:59 AM
Well many of the papers I'm finding I can't find by searching. I find them in the citations on other papers. So I doubt you own the ability to find things that aren't easily searched. I'm doing a fine job of it without ever even seeing your materials. Still haven't. I didn't have the time yet.
You sent Today at 2:01 AM
I have close to 180 papers linked and sorted, and some are pretty obscure. I am lacking atypical/complex papers and need to get into that category better. I also don't have Pirani's classification paper and I also am looking for more stuff on genetic and non-idiopathic, neuromuscular stuff. Those sections seem incomplete or low in papers to me.
You sent Today at 2:03 AM
i'm also interested in foot length and calf muscle discrepancy stuff. Mostly because I've had a theory since my kid was a baby that Ponseti feet have less differences and atrophy than surgical feet. So far the couple papers I've seen are corroborating that.
An sent Today at 2:06 AM
To write the stuff we did, we have made pubs ready to place with all those things already, part of what we submitted for copyright. There will be a new world of pubs in those for you, that includes many related fields of study we undertook to make these suggestions. It would all be revealed soon, but we already revealed to physicians that joined in on the design process. They also took all our literature to peruse themselves. It will fill the gaps you have for sure.
An sent Today at 2:11 AM
There is a huge difference between positional and real ctev. The calf would not be involved in positional
An sent Today at 2:11 AM
Mri studies reveal the difference in real ctev
An sent Today at 2:11 AM
Positional ctev is actually a different group of disorders and I think should be separated from Clubfoot completely in a way. It does not involve bone
An sent Today at 2:11 AM
Easily viable and it holds
You sent Today at 2:11 AM
Well, the calf atrophy does seem to be far less now. Whatever the cause, by using the foot and leg instead of using knives and breaking bones allows the foot to be used and build muscle and grow better. I can show you the studies that find that to be true.
An sent Today at 2:12 AM
Positional should not need any cutting in any ways
An sent Today at 2:12 AM
That was never a good move back then even. Horrid what they did to some in those cutting years
An sent Today at 2:12 AM
But even syndromic severe ctev does not have the healthy tissues for the cutting
You sent Today at 2:12 AM
See I think that's why people get upset with you. You were mentioning that yesterday... It feels exclusionary to people. Like you're telling them their kid's cf isn't real. Which you actually just said. So imagine if your kid had all kinds of issues just like a genetic kid did and someone comes along and tells you your kid's cf isn't real cf. Do you see how that might make someone feel a little hostile?
An sent Today at 2:13 AM
It is stated in literature, it’s not my statement?
You sent Today at 2:15 AM
Care to share?
An sent Today at 2:25 AM
Even under positional there is a distinction between causes at least per my analysis. Will find it for you, but it’s not a priority fir now for me. Too much work waiting this week with meetings
An sent Today at 2:27 AM
An sent Today at 2:29 AM
Read The first page on Google about positional ctev
An sent Today at 2:29 AM
First statement says it lacks abnormality
An sent Today at 2:29 AM
Second one by Steps says it’s not true ctev
An sent Today at 2:29 AM
But please note they are also wrong and confusing you by bringing in true ctev in the conversation there
An sent Today at 2:29 AM
Using the terms interchangeably is what they are doing and it should stop
An sent Today at 2:29 AM
That is deliberate
You sent Today at 2:31 AM
Well, that’s assuming everuyone accepts that nothing but the genetic ones are anything but positional.
Positional to many means that it doesn’t really need treatment. Historically that’s what positional means. So ya gotta do something about that word.
Come up with an inclusive word or something because its not true that everyone but genetic doesn’t need treatment or vigilant bracing. It’s not only genetic that relapse. Not only genetic that are stiff and have high severity scores.
An sent Today at 2:32 AM
http://www.pmmonline.org/page.aspx?id=1758
XMA Header Image
Clubfoot
pmmonline.org
An sent Today at 2:32 AM
The word clubfoot is used because of the appearance
An sent Today at 2:32 AM
But I don’t think it’s the right word to use perse because it does confuse so many people
An sent Today at 2:32 AM
I don’t blame people who are confused
You sent Today at 2:33 AM
All I’m saying is that much of this comes off as exclusionary and as if others aren’t important.
I.e. real
An sent Today at 2:33 AM
The way it is used is confusing in itself by physicians nonetheless
You sent Today at 2:33 AM
Cf maybe just needs categories
An sent Today at 2:34 AM
No I belief it needs new classification as in a different disorder category it falls under. And there are different types of positional imho based on what we know about it
An sent Today at 2:34 AM
There should be different classes for those based on gene testing
An sent Today at 2:34 AM
Some of the positional ones may be genetic
An sent Today at 2:34 AM
And a certain person, simply positional with no genes involved
You sent Today at 2:35 AM
Such as:
Clubfoot with a side of arthrogryosis
Lol
An sent Today at 2:35 AM
But if the genes are not the same as ctev, it’s caused by a different situation and it should not be classed with ctev. By now they already know it’s not the same
You sent Today at 2:36 AM
Arthrogryposis
You sent Today at 2:36 AM
I always spell that wrong even when I’m trying hard. Heh
An sent Today at 2:37 AM
It is a Complex topics. Did you know that they don’t consider Arthrogryposis to be a disease but only a symptom?
An sent Today at 2:37 AM
It’s crazy, similar to EDS that is misdiagnosed as Fibromyalgia
You sent Today at 2:37 AM
Nah, I am still learning about that. I just grabbed something off the top of my head for humor sake
An sent Today at 2:37 AM
Some of these disorders are struggling harder than ctev for recognition as its own separate disorder.
You sent Today at 2:38 AM
But still, clubfoot os a descriptive term. I think it was first used by the Greeks in like 2000BC
You sent Today at 2:38 AM
Also CETV is descriptive
An sent Today at 2:40 AM
It may well be, but data has changed the past 20 years and descriptions in literature are improving and becoming more defined. At least we see the improvement since we started. Is it huge, no but beginnings have been made. Each year especially the next 5 I think is going to be exciting...at least in genetics as a whole. And people are going to learn so much more about the body.
You sent Today at 2:40 AM
Each part of cetv is descriptive. It’s not the term that should be used as exclusive. It’s all congenital, all equinus, all talipes (clubfoot), and all varus.
So maybe genetic needs it’s own name that is not descriptive in that way?
An sent Today at 2:41 AM
Genetics will define the new categories of disease in terms of severity and type to a large extend, it has already started in CMT
You sent Today at 2:42 AM
I’m drawing a blank on cmt
An sent Today at 2:42 AM
It’s a disease
You sent Today at 2:42 AM
Figured that
You sent Today at 2:43 AM
Acronyms I don’t use regularly aren’t quite at the top of my tongue
An sent Today at 2:43 AM
Meaning conditions that they address genetically might be removed permanently as a severe disease if they can fix it and people that used to be able to qualify as disabled will no longer considered to be disabled
An sent Today at 2:43 AM
So disorders as a whole will increasingly change position on the list
You sent Today at 2:43 AM
So I’m looking for the companion paper to dr Ponseti’s 1963 paper, the MA paper. Do you have a source?
An sent Today at 2:46 AM
As to whether it still is a problem
An sent Today at 2:46 AM
I’ll take a look
An sent Today at 2:46 AM
Well the 1966 one you have to pay for
You sent Today at 2:46 AM
Cool thanks!
Three of my cousins wore the dbb for MA in the late 70s which is why I wasn’t disturbed when I was told what kind of brace she would wear.
Then in the early 2000’s it was “dbb doesn’t help MA” but it does help cf. now, they’re back to using it for MA
An sent Today at 2:46 AM
The 1996 one states his findings
An sent Today at 2:46 AM
https://pubmed.ncbi.nlm.nih.gov/8981905/
XMA Header Image
Congenital metatarsus adductus in early human fetal development: a histologic study - PubMed
pubmed.ncbi.nlm.nih.gov
You sent Today at 2:47 AM
Do you have a link to the 1966 listing at least? So I can record the title and maybe I will buy it someday.
You sent Today at 2:47 AM
Oh wait lemme look at that one first, it might be cited.
An sent Today at 2:49 AM
Lots of the lit was removed from public view by PubMed and kid. Here is the evidence. Luckily we printed out much of the lit so it does not prevent me from doing stuff but in future others will struggle. Here is the title
An sent Today at 2:49 AM
https://pubmed.ncbi.nlm.nih.gov/15580738/
XMA Header Image
Congenital metatarsus adductus: the results of treatment - PubMed
pubmed.ncbi.nlm.nih.gov
You sent Today at 2:50 AM
What's the title of the 1966 paper?
You sent Today at 2:50 AM
that's the one I want to see.
An sent Today at 2:50 AM
The one above, do you not see the 1966 next to it?
An sent Today at 2:50 AM
I do
You sent Today at 2:50 AM
Because that's the one the surgeons listened to, while tossing the CF paper aside for 50 years.
You sent Today at 2:51 AM
oop, I see. sorry
An sent Today at 2:52 AM
PubMed removed tons of lit at the beginning of c19
An sent Today at 2:52 AM
Many now give this message
You sent Today at 2:52 AM
This at least has an abstract for it. I am still searching.
https://journals.lww.com/jbjsjournal/Abstract/1966...
XMA Header Image
Congenital Metatarsus Adductus: The Results of Treatment : JBJS
journals.lww.com
An sent Today at 2:53 AM
Yes I found this one first, but it’s payment
An sent Today at 2:53 AM
No longer free
You sent Today at 2:53 AM
better than pub med with nothing.
An sent Today at 2:54 AM
Yes it sometimes is if they do have the abstract. Btw the abstracts of papers are also now not including the conclusions so much anymore
An sent Today at 2:54 AM
Many are now without that
You sent Today at 2:55 AM
What do you mean by c19
You sent Today at 2:55 AM
?
An sent Today at 3:01 AM
Covid
An sent Today at 3:01 AM
But I have to go to still get 2 hrs of actual work in
You sent Today at 3:01 AM
No worries, nice talking and thanks for the links!]
