At the end of every Epilepsy Blog Relay™, we close with a live #LivingWellChat. Join us tonight, June 30, at 7pm ET, to connect with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter and join the conversation.
How does the chat work?
You will find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A.
This Month’s Topic: What could EPIDIOLEX mean for those living with epilepsy?
Throughout the chat we will touch on the following:
Q1: Take a minute to say hello and introduce yourself.
Q2: Is anyone on the chat affected by LGS or Dravet Syndrome?
Q3: If you are not affected by LGS or Dravet, are you living with or affected by epilepsy in some way?
Q4: Is everyone here familiar with LGS and Dravet? Maybe those families living with these syndromes could share a bit about them.
Q6: I’m curious, did you hear testimony from any of the families who spoke to the FDA on Epidiolex this spring?
Q7: As I understand it the drug won’t be available until Fall the earliest but has there been any discussion of cost?
Q8: Can anyone speak to what other options are are available for LGS and Dravet families?
Q9: This is a question for everyone, when you were first diagnosed was SUDEP ever discussed?
Q10: Is there something you wish your doctor spent more time talking about in that first discussion?
Q11: What do you want the world to know about the realities of living with epilepsy?
Q12: Join us throughout the month of July for our #livingwelloutside campaign. We will be sharing fun stories and pics.
You can use the July hashtag and share your stories here: http://bit.ly/2wHESUt
You can follow the July stories on: http://bit.ly/2Ky34CM
Participating in the June #LivingWellChat
1. Go to http://twubs.com/
2. Be sure to log in using your twitter account **IMPORTANT**
3. Set the chat speed as fast or slow as you prefer
4. The Twitter feed will pop up with all the #LivingWellChat tweets.
5. Be sure to introduce yourself when you come on the chat
6. Join the conversation
I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you!
Follow along even if you don’t have a twitter account
You won’t be able to chime in with your own comments but here are two ways to follow along:
Option 2: Go to https://
Can anyone join in the conversation?
Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat.
Did you enjoy the Epilepsy Blog Relay?
Our next Epilepsy Blog Relay will take place in November, just in time for Epilepsy Awareness Month. If you have a story to share, sign up now. Spots are going fast. Here’s the link to participate as a blogger.
If you would like to participate as a sponsor, send us an email to firstname.lastname@example.org. We will be happy to send you our media kit.