Friday, July 31, 2009

Here we go Utah Chiarians

I expect that we will be seeing a lot of growth on this site over the next few weeks. Guys - we are going to miss the walk this year. Possibly! I'm going to check into that this week.

Okay - here's the thing. Today I am writing the "Proclamation" for the State of Utah. I also am going to call the State Governors office and begin the process of getting this proclamation signed. As the group grows and I am getting active comments from the group we will be making plans to get to the State Capital all of us together and as many news and television stations as we can get there and we are all going to sign this "Proclamation" together. My hopes are to have at least 30 people with Chiari there. I'd even love to see the signiture of little chiari hands on there. This "Proclamation" for Utah is going to be a BIG, HUGELY BIG help for every one of us. It will open awareness and make it easier for applications for Medicare, and Social Security Disability to be accepted. It will help many of us get the Handicapped stickers on our liscence plates easier. It's going to unite the medical community with US as they realize that WE must and will fight to get the best care.

I'm a born fighter guys. The reason I am doing this is because I haven't had to go through all that I have. IF I can keep any of you from going through what I have and am going through. I honestly will be happy. I could die feeling like I left each of you in a better situation.

If WE cannot get the walk organized for this year. OUR next big step is our organizing support groups. "I" don't like all the "I's" in this post. But - time is running out and things need to get going. The reason I don't like the "I's" is this isn't my battle to be fought alone. It's something that WE need to do together. I need an active commitee around me so things will go much better. If I do this along than Utah will not become the best Chiari supported state in the Nation. That's what I want it to be.

I have a lot of goals! I've had to give up a lot of goals because of Chiari. And a whole lot of dreams too. CHIARI DOES THAT! I know I"m not alone. Chiari can't take these goals away. We can't let it.

"I have Chiari, BUT Chiari doesn't have me" that's my " " - I will NEVER LET IT! I wont let it get you either! God Bless ya'all!


Wednesday, July 29, 2009

Hey all of you. Keep a watch out because things are happening.

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.

Thursday, July 9, 2009

I hate to do this everyone

I'm sorry guys - I didn't get a response back soon enough to set anything up, so we're going to have to schedule another night or sat. morning. Does anyone have a problem with the 16 or the 18Th. It would be 7:00 on the sixteenth, or let's say 11:00 on the 18Th. Does this work for everyone? Please let me know before Monday the 13Th of July so that I have time to set up a place. We could do it tonight here at my house but I live clear in Layton and that would be a long drive for some of you. I'll be looking for your response. Thanks again guys! Kelly p.s. This works for me a bit better anyway because my Grandmother passed away and we're in the middle of that right now in our family.