Michigan's Chiari Malformation Awareness Day Information
I am in the process of trying to set up an awareness day in the state of Michigan for Chiari Malformation. Currently it seems that setting up a "one time occurrence" of Chiari Malformation Awareness Day, is going to happen and be very simple to do. My ultimate goal would be to have this day set in stone to happen every year, not only in the state of Michigan, but Nationally.
Because of my time limitations, and energy limitations I am a Chiarian too, I thought starting with Michigan would be a good first step. In order for this day to be a yearly re-occurring thing we have to get our state representatives involved. Gov. Granholm's Special Correspondence Office explained to me that the best way to get the representatives to be interested is if we ALL send emails to them showing we would like to see this happen.
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What should YOU do? |
| I have been getting flooded with
questions on how to get other states involved in Chiari Awareness. I
do not want to post the message that I used simply because every one of us
have a different story and we need to tell our own story. Simply put,
I contacted our state governors office, and explained what happened to me
and how frustrating it was to be diagnosed and treated. I explained
that this frustration stemmed from a general lack of knowledge about the
condition and that I was wondering how I could bring awareness to the
condition. I specifically asked about creating an awareness day for
Chiari. In my opinion explaining how un aware the medical community is about this condition, and backing it up with statistics is very important. Facts such as how many are considered to have the condition, how long it typically takes to get diagnosed, and how long you lived with it before the doctors took you serious about your condition. You can find facts from my chiari info page, conquer chiari, or the National Institute of Neurological Disorders website along with many others. Be thorough but brief at the same time. Do not write so much that they will get bored reading it, but write enough to show how important it is that the state helps create awareness for the condition. If you feel that your story has become too long but needs to be that long to properly convey your point, make sure you put what you are looking for, a chiari awareness day, in the beginning of your email. Remember, I am just a Chiarian too. I do not know anyone in government, and have no clue how to properly address a situation like this. I just knew that the highest ranking person in the state was the governor and I wanted her help. I wrote her from my heart and asked for her help. Maybe I was just lucky, but all it took was one email to get her attention, after that her office emailed me back, a couple of weeks later, and after a phone conversation, and a bit more information by email we had the proclamation. |
I will attempt to make it as easy as possible for everyone to find their respective senator/representative for the state of Michigan.
Click here to find you Senate District Click here to find your house district