The day before yesterday I sent out a very special E mail to Florida Governor Charlie Crist containing a proposal for initiating a State of Florida Proclamation on behalf of This Network and for Narcolepsy. This means if the proposal is accepted the process will begin to set aside a very special day in Florida that recognizes Narcolepsy and this Network too.
I am copying and pasting the result of my E mail herein.
It is imperative that I get comments and suggestions as well as any help from members as well as administration regarding this little project of mine. I know that Minn was the first state to set aside a special day for awareness of Narcolepsy. I would be so proud and honored if Florida would become the second state to follow suit.
Please, please let me know if you can help me in any way you can to get this project on the right path to completion.
John Browne Ayes
I received my answer today:
"Dear Mr. Ayes,
Thank you for contacting Lieutenant Governor Jeff Kottkamp. The Lieutenant Governor appreciates your concerns for those afflicted with Narcolepsy and asked me to respond on his behalf.
To assist you more directly regarding your request for a proclamation, I forwarded a copy of your email to the Governor’s External Affairs office for their review and response. The External Affairs office is responsible for issuing proclamations on behalf of the Governor, as well as overseeing his scheduling office. If you wish to contact that Department, please direct your input to:
Governor’s External Affairs Office
The Capitol, LL-10
Tallahassee, FL 32399
Thank you for contacting the Lieutenant Governor’s office.
I have already begun working upon a rough draft of the Proclamation...
Find copy here:
STATE OF FLORIDA
WHEREAS: Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles; and
WHEREAS: Narcolepsy affects an estimated 1 in every 2,000 Americans; and
WHEREAS: Narcolapsy is under recognized and under diagnosed condition; and
WHEREAS: The symptoms of narcolepsy causes accidents, injuries and problems with learning and employment; and
WHEREAS: Narcolepsy effects people neurologically, socially and emotionally; and
WHEREAS: Narcolepsy affects people of all ages, with onset typically between the ages of 14 to 25 as well as persons over 55 years of age; and
WHEREAS: THE NARCOLEPSY NETWORK is a nstionsl organization created to promote awareness and education of the the disease and support for those who suffer from narcolepsy.
NOW THEREFORE I________________________________________________Governor of the State of Florida do hereby proclaim
Day_____________________________Date________________________Year_________________________________to be Narcolepsy
A Very Special Proclamation
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