Tuesday, July 14, 2009

I thought I'd let you all know what we are going to be talking about at the meeting. First of all the month of September has been designated as Chiari Awareness month. I volunteered to establish the activities for the State of Utah. The meeting is to get these things organized. Here is a list of things we will be discussing in the meeting.

#1 Finding as many of the Chiari sufferers in the State of Utah as we can.
#2 The Proclamation on Chiari Awareness
#3 The Chiari walk for the cure
#4 Support Groups

Right now these are pretty much the most important things that need to get accomplished. There are other things that need to be established here in Utah, however those will come. We have much that we need to get going September is right around the corner. I really appreciate your help. I don't even know that I really asked you for your help, that's pretty rude of me. I apologize for that. We need to meet within the next few weeks. I am waiting for some business cards I had made to get here - I'd like to have them with me at the meeting. Again ... thank you for your willingness to help - there are a lot of lonely and struggling chiarians and family members who need help. I look forward to hearing from you all and I look even more forward to meeting you. We have a member of our group heading to NY and the chiari institute for surgery. Keep he and his family in your thoughts and prayers. Bryce and Kellye - our hearts are with you.

7 comments:

Becky said...

Sounds like you are off to an incredible start!

reliza said...

I have just become aware of Chiari~even though it was on my last 2 MRIs'. Tomorrow is my first visit with a neuro surgeon, it can't get here quick enough. Let me know what I can do to help with cm awareness, it is past time.

Kelly Morrill said...

reliza - I am glad you left a comment. Thanks for becoming a part of the group. I am trying to organize a meeting for all of those who are willing to help. We have a lot to do and time is running out. I do need help. I can't do this alone. Please keep an eye on this site and give me a call at 801-643-6193 I'd like to know how things went tomorrow and let you know what needs to be done. Thanks again. Kelly

Plant Girl said...

Although not in Utah (Idaho Falls), I stumbled across this blog the other day when trying to gain more info on chiari malformations. I was told last week that I have one, but have no idea of the severity and am waiting to set up an appointment with a neurosurgeon here in town.

I am scared, overwhelmed and desperately seeking support and information on ACM. I hope that you don't mind me tagging along and watching this blog. It seems as though there is even less support in Idaho.

Kelly Morrill said...

Oh my goodness, I had a full post on here and lost it. Hey, TAG ALONG AS LONG AS YOU LIKE!!!! I am in the process of organizing support groups all along the state of Utah North to South.My plan is to set up SKYPE and make it so that all you would need to do is join in online.
I understand your fears. I know them well. Just when you think you've got them conquered you'll find there are other's. You are going to find out that you are among the very brave of the earth. Chiari is not for sissy's, and you are no sissy. The more you battle the more incredible you are going to become. My hopes are to keep you from having to battle more than necessary. I have battled more than necessary.
Please ..... feel free to call me any time. I'm sorry it's not local because it could prove to be a long conversation. My phone number is 801-643-6193.I'm not going to tell you not to be afraid because if I did that than I don't validate those very real fears. I am however going to help you realize that you can do this. And I'll be here and this growing group along with me to help you through. Hang in there!!!!! Kelly

reliza said...

Skype is a good idea~traveling can be such a challange! I look forward to meeting more chiarians.
~Robin

reliza said...

Just back from another useless neurologist appt., he says my symptoms are not from the 10mm chiari,(he said 1mm, I corrected him, um 1 cm...are you even looking?), but from whiplash. Yikes. Oh well, I'll go to physical therapy on Monday and see what they have to say. Is Chiari real, or just a made up disease, I'm lost.