Where Advocacy, Special Needs Parenting, & Life Collide
Special Needs Connections – Twitter Epilepsy Connections
Making Special Needs Connections For Epilepsy on Twitter
Making special needs connections is hard, and when you are looking specifically for someone to talk to about Epilepsy it is sometimes even harder.
Why?
Because on social media, not everyone is actually “social” – you might follow several accounts that have no current activity (let’s face it, not everyone tweets or posts on Facebook when their life is impacted by Epilepsy, right?). So, part of the Cafe’s current initiative is to help connect you with folks with various special needs, like epilepsy or autism or cerebral palsy, who ARE active in the various social media forums.
Why are Epilepsy and Special Needs Connections Important Anyway?
Being connected gives us power, to learn, to educate, to invoke change. Epilepsy takes your power away, whether you are the one with the disorder, or love someone who has it — you can’t (no matter how hard you try) always predict when a seizure will strike. You can’t dictate how severe those seizures will be when they occur. You can’t dictate whether medications will work the way you want them to.
But you can reach out. You can connect. And you can help someone else because of where you are in your own journey.
Twitter is a Whole Society of Different Folks, Including those with Epilepsy
And when you find folks who interact with you, who can help you, send you a tweet when they know you’ve had a bad seizure day (like we did yesterday; see tweet below), making those connections becomes a way to give empathy and support.
G+: So, just picked up my youngest after he had a nasty seizure at school. He actually had a couple small absent… plus.google.com/10711085785183…
— Katrina Moody (@KatrinaMoody) January 30, 2012
Quick Epilepsy Folks to Follow:
While this is just a sampling, at the end, you will find a link to my EPILEPSY LIST on Twitter, and you can find 65 other folks listed. It isn’t complete by any means, so give me a tweet with the hashtag #EPILEPSYCONNECTIONS and the @USERNAME of the person who should be included and I’ll check out their profile and tweet history!
Making connections.
It really does make it easier.
With that in mind, I would like to connect you with several individuals and organizations who actively tweet about Epilepsy.
Twitter #Name5 of your favorite Tweeps! @JessicaKSmith @bryanfarley @katrinamoody @TENofficial @lvngnbrainstorm RT!
— EpilepsyBlogger (@EpilepsyBlogger) January 31, 2012
Jessica K. Smith
@jessicaksmith Philly Area
Writer, Marketer & Founder of Living Well With Epilepsy, an online resource for individuals and organizations.http://cafepress.com/livingwellwithepilepsy/
EpilepsyBlogger – A.K.A. Mandy Krzywonski
@EpilepsyBlogger San Antonio, Texas
Non-Profit, One-person Organization for Epilepsyhttp://Facebook.com/EpilepsyBlogger andhttp://www.youtube.com/user/EpilepsyBlogger
Bryan Farley
@bryanfarley Oakland, California
Visual Communications and Digital Media Educator. Photographer. National epilepsy advocate. Wm St Grad. More about me http://about.me/bryanfarley) and at
TheEpilepsyNetwork
@TENofficial
The Epilepsy Network (TEN) We are a non-profit organization for epilepsy awareness, advocacy and research. Facebook:http://www.facebook.com/theepilepsynetwork
SUDEP Aware
@SUDEPaware Toronto, Canada
We are a non-profit organisation dedicated to promoting knowledge and understanding of sudden, unexpected death in epilepsy (SUDEP).
BC Epilepsy Society
@BCEpilepsy British Columbia, Canada
Provides education, advocacy and support for those affected by epilepsy.
Erica Egge
@lvngnbrainstorm Denver
I had brain surgery for my epilepsy in Jan ’11 and been seizure free since! Spreading awareness and helping others overcome their barriers.
Epilepsy Foundation
@EpilepsyFdn Washington, DC
We help people w/ epilepsy & seizures and their supporters. We provide info & services and support research so that not another moment is lost to seizures.
Epilepsy Action
@epilepsyaction Leeds, UK
The UK’s leading member-led epilepsy charity, providing information for the 600,000 people with epilepsy in the UK and anyone with an interest in the condition
EpilepsyFoundationFL
@EFOF Florida
The Epilepsy Foundation of Florida (EFOF) leads the fight to stop seizures, find a cure and overcome challenges created by epilepsy. 375,000 Floridians
Epilepsy OW
@Epilepsy_Wisdom New York
Organizing epilepsy resources shared by health experts, advocates, and organizations into WisdomCards.
TalkAboutIt.org
@TalkAboutItorg Los Angeles
It’s time to talk about it! Every voice makes a difference! We are an epilepsy awareness organization, founded by@GregGrunberg.
CURE Epilepsy
@cureepilepsy
Citizens United for Research in Epilepsy | Hope::Research::CURE
More Special Needs Connections on Twitter for Epilepsy
Do check out the Epilepsy Awareness List I created on Twitter, which includes those with Epilepsy, those who love someone with Epilepsy, Organizations and others working for a cure or to spread awareness.
It’s all about making connections:
EPILEPSY AWARENESS LIST
And don’t forget the hashtag #EPILEPSYCONNECTIONS and the @USERNAME of the person you think should be included. Here … you can do it right now:
Katrina Moody
Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Latest posts by Katrina Moody (see all)
- Special Needs Kids Win the World! 29 Great Bike Giveaway Winners! - May 17, 2013
- Our Birth Story and the Story of Hope - May 8, 2013
- Awesome Adaptive Bike Giveaway for Children with Special Needs - May 6, 2013
Thanks for the list of people to follow on Twitter. I love to help people with special needs because I can relate to their situation.
(dofollow)
Tracyann0312 recently posted..דיוור אלקטרוני
That’s great! You’ll definitely have a great start by visiting with the folks I’ve included here and on the shared Twitter List. Stay tuned for more posts to come with other special needs in focus.
Thanks Katrina, I will probably stay tuned in for more post to come. Just curious, are they all connected to epilepsy? How did you find them all in twitter?
(dofollow)
Tracyann0312 recently posted..דיוור אלקטרוני
Yep … I’ll try to connect them all to a specific theme each time I do a post like this. Thanks for sticking with me Tracy!
thanks for sharing the list of people on twitter so that we can follow