Friday, October 26, 2012

Dysautonomia Awareness Month Wrap Up Events!

Well, only a few days are left in the first ever Dysautonomia Awareness Month!  There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events.

Event 1:

The Tweet-A-Thon and Tweet Chat are scheduled for Sunday at 8 PM EST:

Here is the post from the Dysautonomia SOS Blog:

SUNDAY! The ORIGINAL Tweet-A-Thon, taking place with anyone who wants to be involved. Let’s get #dysautonomia trending the right way!

For something to trend on Twitter, we all need to tweet at the same time! Not spam people with tweets all day long, but tweet #dysautonomia in mass. That was the original plan on the date above. Other organizations have chosen to take this idea we came up with and do it their way on a different day, and that is fine - we want as much dysautonomia publicity as possible! BUT! We have to be careful to NOT SPAM, or it defeats the purpose and ends up clogging up people’s twitter feeds, and they don’t click on links to more info. 

Our suggestions for participation, in conjunction with DINET, can be found here.

We also will host a #dysautonomia TWITTER CHAT at the same time - SUNDAY 8PM EST.
We want to hear how your condition affects you!

The world needs to know! Include or search for #dysautonomiaTC (for Twitter Chat) to participate. We will ask questions to get the conversation going, but feel free to participate as you see fit.

We are dedicating the event to an amazing lady who actually came up with this idea, Miss Nikki Ann. She suffers from a multitude of dysautonomias and other health issues, including POTS, PAF, MCAD, and many many more. She originally came up with the idea to tweet about dysautonomia like crazy, and we (being me, Claire) discussed it at length in terms of organization and how to rally the online troops. She has been very sick, and busy trying to get treatment and firm diagnoses, but she still takes time to be very active in the online dysautonomia activist community.  Find her story and learn more about her here:
On YouTube: MissNikkiAnn
On Twitter: @MissNikkiAnn
Blog: Miss Nikki Ann’s House

You can also find a special feature she did for our website ( once we are launched!

Come chat  (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!

Let’s do this. 
Event 2:

Monday, Oct 29th!
Created by Cathi Godgirl Mitchell

In honor of Dysautonomia Awareness Month, paint or color JUST your thumb with a shade of royal blue nail polish on Monday, October, 29, 2012. When anyone asks you why you did it, give them a thumbs up for asking and be prepared to tell them about Dysautonomia. Education is the key and it is only by spreading awareness do we have a chance of ever finding a cure for this dreaded disease. So tell the person who asked about the loved one, friend, or neighbor, that you know that has it. 

Tell them how to say it.
(Dis - auto - know- me - ah). Tell them that it is an incurable disease that causes the autonomic nervous system to dysfunction and causes problems with blood circulation and other body systems. Tell them that it also causes other debilitating symptoms. Tell them any other information that you know about Dysautonomia and direct them to websites like www.dinet if they want to know more. Lastly, make sure to conclude the conversation with another thumbs up...... for YOU for helping to spread awareness! Please spread the word and thanks for considering participating in this effort! Cathi


Thanks! If you have other events you know of your come up with, even last minute - let us know! 

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