Thank you for getting on this site and showing your interest in setting up what I hope will one day be the strongest Chiari Network in the Nation. I've had the opportunity to speak with almost each of you and there is one thing each of us share in common - we all feel the need for a support group. If the six of us feel the need, can you imagine how many others there are?
I would like to get us all together along with any supportive family members or friends you can find. My goal date for us meeting is July ninth, two weeks from today. I'm currently looking for a central meeting place. We are currently stretched from Layton to Provo. I don't mind traveling, it's just me up north here and I wont require any of you to travel this way. At least not yet. Please let me know if the ninth works for each of you. The time I'm aiming for is 7pm. My first thought of a meeting place is my sisters house in Herriman. Is that a problem for anyone or do any of you have any other ideas? Right now this is just an idea I have. We aren't going to be small enough to meet in a home for long. Though, I am seriously considering us to be a closed committee. We'll discuss that on the ninth.
I need a really fast response from everyone, and, if you have any others you know about who have Chiari please invite them. We have a lot to do and our time is decreasing every day. Alisa asked if I needed her contact information, I do, I need to know how to contact each of you. Please respond to this by leaving a comment to this blog.
Thank you guys, every one of you, we're pioneers fighting for a very necessary cause, to improve, preserve, and strengthen a very special group of people. As soon as I hear back from you I will be posting a meeting agenda. I want each of you to know this one thing, I am merely the organizer here I'm no different than each of you except that I don't want anyone else to go through what I have and if I can prevent anyone from having a future like my past I will be seriously happy.
Please answer me soon, very soon.
Thank you all Kelly