I want to let everyone know that this is a Chiari Utah site. This page will take a different change in focus from here on out. Yes, I will add my personal stories, but it will also be a place of support for those in Utah who will be seeking help. The purpose is as the web site says www.acmzipperheadsunite.blogspot.com.
There will be business cards circulating through out Utah at various Dr's offices and hospitals where we know that there will be patients attending. It is vital that we find each and every person with Chiari in the state. This site will show the progress of Utah's efforts to establish a state chapter. The most important part of this site is to get an active physical support group going. We are well on our way to do so. I ask that as you come to this site and you read this post that each of you weather you yourself physically have Chiari or you if have Chiari vicariously through someone you love.
I am currently in the process of writing a proclamation for the state of Utah. The next step is to add to it as many of our personal stories as I can. Please keep in mind that what will actually be in the proclamation must fit on one page. However we will be sending the proclamation and each personal story to the Governor of Utah which has changed and forgive me but I can't recall the name of the new Governor. We will be joining, each person who we locate over the next three months, with the Governor and the TV, radio, and area news papers to sign this proclamation in September which has been designated as Chiari Awareness Month nation wide.
We have hopefully joining with us on the board a Lawyer who is the father of Bryce Foster a zipperhead from Salt Lake City. Who oddly enough is also related to Bill O'riely (plz excuse my spelling). I also have two other prominent Utahans I am hoping to add to our board.
This is not a me effort. I need the help of all of you with Chiari and who are family members of Chiarians. I love that word. It nearly makes us a whole other culture. Maybe in a way we are.
WE DO NOT HAVE A GOOD KNOWLEDGEABLE NEURO TEAM IN THE STATE OF UTAH. IT'S EXTREMELY IMPORTANT THAT YOU LEARN AS MUCH ABOUT YOURSELF IN REGARDS TO THE DIFFERENT FINDINGS INVOLVED IN CHIARI AS THE KNOWLEDGE OF IT EVOLVES. IT CAN EFFECT THE WAY THE CERTAIN SURGERIES WILL EFFECT YOU AND IT CAN HELP YOU IN YOUR DECISIONS OF HOW TO MAINTAIN OR REGAIN YOUR QUALITY OF LIFE. Be proactive, fight for yourself. You are not a Guinea pig and no Dr. or surgeon has the right to just try out some idea on you.
We need to stand together. Because this is a lonely difficult battle, and it can be waring on our family members, but together we can share these stories, our pains, our fears, our frustrations, our extreme pain, and the very difficult lonely battle we are fighting with each other. There is no judgemental attitudes among each other. Don't run away from this battle. Don't be afraid to face and accept it. Doing so can damage you for the rest of your life. Physically and even emotionally.
WE ARE STRONGER TOGETHER!!!!
LET'S DO THIS!!!!!!!!!!!!