Hey, hello everybody!
E 'was hard, but we finally we did it! In February 2008 we were able to establish the voluntary organization" Nathan "- in support of children born with deformities of the legs. What can I say, it was a battle! I do not even know how many hours we have invested, including statutes, forum, website, medical information, telephone contacts and more ... was intense, but beautiful at the same time! In fact we were not clear what should be our role: we just wanted to help these children. And gradually it took shape, becoming a real organization. (If you want to know more please visit our Homepage .)
I wanted to keep this blog of the 'AIECAI "(Italian Association Ectromelie lower limbs) as a blog of "Nathan," just because everything is born here. And not to lose the memory of those days and then post written them below, as a reminder of bygone days: 01/26/2008
Ok, we are ready to go
I just wonder if someone will read this blog, or if it was all wasted effort ... and we are really very few with this problem ... but that is why it is important to support each other ...
Okay, I'll try ... we'll see how it goes ...
Hello everyone (if you are there and even if no)
01/26/2008
Regarding the association
As we have already explained several possibilities for the association:
- find a space within "reach" - the Italian association of children with limb malformations: is an association, already well established and experienced, which in Italy has been in existence for 20 years. We offer space on their site, their newsletter their quarterly and annual meeting. The problem is that most of the members are parents of children with hands and arms ... well, I would not invade their field ...
- find a space in "Standbein" - the European association of children with femoral hypoplasia and / or agenesis of the fibula: it was founded recently in Germany and has its headquarters in Bremen. I do have a partner, but for most of us see a big Italian language problem ... but we could join them and create, with their support, the Italian section. By the way ... "Standbein" is pronounced schtandbain and means ... difficult to translate ... the supporting leg
- create our association would certainly be the best, but it represents a big commitment and a lot of work. However, if anyone wants, and is very keen to work and to engage, I will participate willingly! Only this is not what I can do it alone! So, who comes forward?
01/26/2008
As for the site
As mentioned I think it is important to create a site, to gather medical information concerning the pathology and our experiences. I can think of the following pages:
- Faq
- General Medical Information: femoral hypoplasia
- Clinical picture and classification
- What can be done?
- Causes and statistics
- General Medical Information: fibular agenesis
- Clinical picture and classification
- What can be done?
- Causes and statistics
- Fixatives and methods compared
- Interviews with experts from medicine
- News
- Our rights and how to get
- Living with a guardian Living with the fixator
- Personal Stories from around the world
- Logs (in the form of blogs)
- Events
- Second-Hand-Shop: everything you need to exchange (trousers modified for fixers, shoes, pedals bikes etc).
- Forum
Kisses, Marisa
26/01/2008
ok, the omelette is done!
Ok, I did it! I launched the appeal on the form of aidweb ... help! Already I regret it? ... No, that is if I am not writing no one will be extremely disappointed if I write ... and it really touches on the very site!
Well, I admit ... I have a bit of fear ;-)
01/29/2008
is rising all over our forum
I found the solution!
Browsing the net I finally found a way to create a forum of our own. I thought the forum to expand, and make it the meeting place for parents and children with limb malformations, given that many issues are similar. Be patient, I'm working on ... just a few days and will be ready. There you can bring our experiences, talk about the association, discuss the medical information etc. I structured the forum in great detail, so that they can discuss various issues related to our problem.
In this I was inspired by a German forum (www.rehakids.de), which I visit often, and that unlike other forum offers the advantage of being able to give a better picture on the topics discussed, you can investigate various issues related to the problem, and thus be more "alive" and "profound." I hope to be our meeting point, to speak not only of the disease, but also everything that goes around, and why not, to know better ... and who knows, also to establish new friendships. There will be a place for everything! Hope you like it! Terro
started this blog, using it as a diary for the association. Visit it to stay informed on the latest events! Terro also opened the blog with medical information, which will summarize the most important information gathered in the forum ... so that is not lost among the various threads and posts.
Please let me a comment to let me know if you agree with this approach!
hug you all, Marisa
02/02/2008
The forum is ready - or almost
Hello! !
Done! She is ready to release "proof" of the forum. Now I need your help. We need to see
1. if it works (if I gave permissions are correct): Here you
help me, because I've always as administrator all the rights,
users do not, then I do not know if for you everything works as it should
2. if the definitions and explanations are correct in content and in form
(grammar, spelling)
3. if the structure as it is okay
How can you help me? Simple:
1. go to the Forum without registering and
try to enter the forum and sub. In theory as
unregistered users can read everything, but you can not write. If
entering the forum, you will find an icon on the left that says
"new topic", and you can not ask you to click the
registration, then it is a mistake. Please let in Nathan -> Requests
members-> errors Technical !
2. Register: you can record you choose a password.
If not, there is a mistake! Please let in Nathan -> Requests
members-> technical errors!
3. Go to your profile -> Groups and sign up your group membership
: AIECAI: for parents of children with
ectromelie lower limbs, to reach: for members, Nathan
for members. (To be safe send me an email if there
be granted entry into the group ... do I have to give me)
4. Now you are free to write anywhere. What you put in will no more deletions
(Unless I want it ... I can erase all
)
5. Contrallate the structure of the forum: missing something?
I have to delete something? Should I change anything? Write it in "Nathan -> Requests
members-> error structure "
6. Carefully read all the text and reported errors in "Nathan
-> Requests for members-> error text "
Thanks for your cooperation and have fun!
Ps: You can already start using the forum as it should. The rules of the house I have not yet written. They are simple rules of etiquette (and sorry if I write, but are not fully discounted) and help us keep this forum a friendly and full of affection - incidentally, this is our "home"
The first rule is to present in "our living room -> round of presentations before the
second is to salute when you enter a new topic (sorry if I write it ... I do not want to offend anyone!)
The third is that we give all of you (you all agree?)
The fourth is that trying to keep "order", that try to place the topic in the forums so everyone can find them
Ok?
Thanks again! Hugs to everyone and see you on the forum!
02/06/2008
Hello everyone!
We have an important technical problem! I was forced to temporarily block the forum because we are forced to move elsewhere. For here:
- do not allow us to backup the forum (ie one day all the information will be lost)
- if nobody uses the forum for 20 days, the forum is automatically deleted!!
I should clarify these points with the manager. Unless conditions change, the shift to a server to be paid! So for now not to write anything else ... transfer the forum becomes a big job! Sorry for the inconvenience! ... You still are not very experienced ... but we will solve in a few days! PROMISED!
To keep up, read on here on the blog!
Thanks and hello!
19/02/2008
The forum is ready
Hello everyone!
Finally we made it! Now the forum is ready. We moved on
www.nathan-forum.org.
awaits you on the forum!
A hug, Marisa
