facebook

[hernandez7]

ok i do alot of with my facebook account.there is a page that i just joined for supporting chiari.idk if any of u do facebook but i thought it was neat.now i did suggest to some of them to find this group also since they have so many questions.i know 1 question was is the colors for supprting chiari purple or turqouise???and where can u get the pins and stuff to show awareness????i was curios if there was any links on facebook and is how i found it.glad to see everyone tring to make it more known.its very frustrating when u go to er and the nurses don't even know what it is and has to look it up on the computer.need to get more awareness out there

[hernandez7]

yes cmoeller u  ahve to have control to keep them safe.i don't know if i have actually joined any groups just talking to other parents that r going through the same.selma not sure what u mean about avatir.i just want to be able to purchase the pins and products to help support it.i have just started the journey compared to some of you and already frustrated with the fact that there isn't enough awareness.i don't want to have any conflict on facebook just meet people that relate to talk to like on here.thank you all.if your on facebook u can send me a friends request.barbara hernandez with a lil doll as my pic.thank all of u!!!!

[*Stormy*]

Just to clarify...it's not FB in general that I dislike...it's this fight that is going on between two Chiari groups that I am part of. Unfortunately, that battle seems to be taking over most of my news page (I guess I should just delete both?). I have met some really nice people there as well but I didn't find the forums as helpful as here.
So hernandez, my suggestion is just to be careful what groups you join!! If you haven't experienced these issues yet then it looks like you have been lucky enough to miss them! BTW- my "tweenage" son is on FB too...there is really no way to stop it, it is the way things are at this age. I do agree that he could do w/o some of the comments that are put up by his friends there but I have strict control of his account. Which is better than when he is at school and facing these things :)
Sheila..will do!
Carolyn

[sheila53213]

hernandez...there are a few people doing things on FB that are chiari related...one girl is making bracelets with two charms on them and all money is being donated to the Conquer Chiari Walk this year. There is another lady making stuffed animals with the zipper on the back of the head and that money also is going to Conquer Chiari Walks. there are quite a few crafty people on FB. I'm on there as well..I have met quite a few great people on there. And like the others I stay away from the drama over the Chiari Foundation. To me the color for chiari is and always will be purple!
if you go to conquerchiari.org you can find a list of walk sites across the country. some statest have more than one walk.

carolyn~would you mind sending me the links as to where you got anything chiari related? I'd appreciate it.

Sheila

[selmaS]

If u want to use that as an avitar just right click on it and save the image....no worries if that is what u wanted....just take it : )

[hernandez7]

i'm sorry about the issues some of you have had with people on facebook.honestly i  haven't really had any issues that being said so far at least with my accout.thankfully.now i really haven't talked to anyone in charge of any of the chiari sites on facebook.i just have met a couple parents like myself trying to understand the chiari with their young children.but i will stay cautious cause i wouldn't want to bring myself any trouble.me and my family uses facebook more as communication especially with family and friends that are all over.we play games together on it.so i guess its up to whom you accept on the account.the one person i did have issues with i completely blocked.i do allow my children on but we also completely supervise and keep their accounts blocked besides to people we agree to have on them so they don't be subjected to anything improper.honestly it was them who got me started on facebook which kind of makes me laugh.unfortunately we can't control everything they do they learned about it from other children at school.but yes i am really trying to find sites to order the pins the car magnets and etc.i did get the sites cmoeller thank you so much.but couldn't find the pin i saw on selmas page.so i guess selma if u could help me i would greatly appreciate it.thank you

[rod44]

So much back stabbing and fighting happening on FB, sending out the wrong message.

Would you be happy for your teenage child to be reading some of the stuff on there, not just this Chiari Foundation thing but in general.

As for the ribbon I was told it was and as selma clarified it  is purple...turquoise was/is the color for Syringomyelia.....

Ray
  

[*Stormy*]

Unfortunately on FB..there is a whirlwind of debate going on between the Chiari Foundation and some other groups. I have decided to keep out of it and honestly b/c of this I have stopped visiting most of the groups and FB in general. I feel that ppl with CM have enough stress w/o having to deal with political drama. That said, the group in question (Chiari Foundation) has for some reason decided that their group should have a different ribbon...to me that's a red flag. So, the official color is purple...I will try and come up with some site that you can purchase items with the right color and I will PM them to you!
Carolyn

[selmaS]

We have a thread here on the walk as well....it gives u links to all the areas that hold the walk I will bump up the link.

Well as I said the color is purple...there is a group trying to change the color for some reason...I am not getting into that fight...but to me chiari's color is and will be purple.

No worries...I find this forum a more peaceful place too : )

"selma"

[hernandez7]

on facebook they have different areas where they r doing the awareness walk.i need to find 1 thats not to far from where i live in ohio.but the chiari color on there is turqouise.i am so confused.i found a site that sold some stuff for chiari awareness but either in the wrong color or not what i am interested in.i want a magnetic sign for my vehichles and  ny bracelets and or pins.but definately looking at the shirts.i have been posting more info about it on my facebook account cause i don't think anyone understands what we r going through.i have told alot of the people to find this group cause u guys r so great with helping me understand.thank you so much!!

[selmaS]

Hi...the color is purple...turquoise was/is the color for syringomyelia....

We all agree awareness is sorely needed....the 3rd annual Walk for Chiari is coming up in Sept.....I am sure if u can get involved with that and help it grow we can get the type of awareness we r looking for : )