Saturday, October 27, 2012

#Dysautonomia Tweet-A-Thon by Dysautonomia SOS

The article below has been copied from:
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 organizationand 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

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

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

Let’s do this.