All over the country, EDSers are trying to make their mark by getting their states to make May Ehlers-Danlos Syndrome Awareness Month. Last year, I was able to get Governor Gibbons to make Nevada May EDS Awareness Month, but as some people don’t know, it doesn’t stop there. In most states, Proclamations are only good for one year, so in March I went to work again. We have a new Governor in Nevada, Brian Sandoval, and with a little effort from myself and the folks at his office, we now have a new Proclamation! Officially, May is Ehlers-Danlos Syndrome Awareness Month in the state of Nevada for 2011! I am holding the copy signed by Governor Sandoval, and couldn’t be more happy!
Getting a Proclamation passed is important for a number of reasons. It is the first step in creating statewide awareness of EDS. It creates more validity when doing advocacy work; for instance, it is easier to convince a hospital to put up EDS posters when the Governor of the state feels it is important enough to be recognized. It is also easier to get media coverage, and specifically getting a Proclamation passed can be enough cause for some local media outlets to run a story on Ehlers-Danlos Syndrome. Also, we EDSers have long been “recognizing” May as EDS Month, but until recently, it wasn’t anything official. As of this month, we have a handful of states that have Proclamations. The more Proclamations, the easier it will be to get a National Ehlers-Danlos Awareness Month in May. And, as we know, the final result of more awareness is more funding, more research, better treatments, and easier diagnoses.
Now that I have the Proclamation in hand for this year, I am on my way to getting some more stuff done locally. I have already contacted all of the media outlets in the state and given them press releases. Hopefully, at least one of them will find our month newsworthy. I am making copies of posters at the print shop (like Kinko’s) this week and will be taking them around to all of our local hospitals, pediatricians, and anywhere else I can think of, and trying to get them placed. By bringing a copy of the Proclamation, it makes the whole concept seem more official.
It doesn’t take that much work to get a Proclamation passed in your state; and, just know, you can work on this any month of the year – don’t think it is too late. If you are interested, go to EDS Network C.A.R.E.S. Proclamations Facebook page
and send them a message. They will get you all of the info, and if you need, they can even provide sample templates. And, if you get a Proclamation, don’t forget to send a thank-you letter to the Governor. A template is provide below. If you are interested in making your own flyers or posters, you can just download them from the EDS Network C.A.R.E.S. Facebook link
and pass them out. If you aren’t up for working on a Proclamation, you can still pass out flyers and posters. I’ve found Kinko’s to be the cheapest place for making them here in town.
Here are the links again:
I will post more info on May EDS Awareness Month soon, but happy May! Gentle high-fives to my fellow zebras! 🙂