Event 1:
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 (www.DysautonomiaSOS.org) once we are launched!
Come chat (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!
Let’s do this.
_____________________________________________________________
Event 2:
THUMBS UP FOR AWARENESS!
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.
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 (www.DysautonomiaSOS.org) once we are launched!
Come chat (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!
Let’s do this.
_____________________________________________________________
Event 2:
THUMBS UP FOR AWARENESS!
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
Facebook event link: https://www.facebook.com/events/357529647674842/
PS - WE LOVE LOVE LOVE THIS IDEA! Cudos to Cathi!
______________________________________________________________________
Thanks! If you have other events you know of your come up with, even last minute - let us know!
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