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Calling all parents of children with seizures! We are starting a chat hour just for you! A time to join with other parents to share experiences, support, and learn from each other. Karen and Colina, two of our mentors will facilitate the group. Meet in the chat room every Thursday from 9 to 10 pm East Coast Time!
Questions? Email me at patty@epilepsytherapyproject.org
Dear Gherkin and Clive,
Just wanted you both to know I am thinking of you and sending lots of prayers your way. Losing a child is so hard, no words to explain this. Losing a child to epilepsy ... while it feels unimaginable, it really points out how devastating this can be.
Please know that you have lots of friends here and I hope you use your supports at home as well,
Thinking of you,
Epi_help
Hi everyone,
Tomorrow we will be launching revisions to the seizure diary to correct some bugs and make using the diary a lot easier. This is NOT the final version. We are working on other updates to make recording of side effects easier and to create better reports to print out, for example.
Here's a few tips...
Hi everyone!
This weekend I am going to Washington DC to participate in the National Epilepsy Walk as part of the American Epilepsy Society's team. We hope to raise lots of money for epilepsy!
Interested in joining? If you are in the area, you can still join the walk in person. Or you can be a virtual walker, or you can sponsor someone or a team.
Please consider sponsoring me and the AES Society. My son Tom will be accompanying me to the walk so should be a great time....
Dear community members,
For quite a while we have heard concerns about chat rooms and the site in general. While a variety of helpful comments have been received, one of the take home messages is to make sure the chat remains a safe supportive environment for everyone. Additionally, people new to epilepsy and new to my.epilepsy.com need some help getting used to the site, learning how to use chat or other parts of the site, or generally just feeling comfortable joining in.
Calling all users!
Recently the board members of Epilepsy Therapy Project shared their perspectives on the unmet medical needs for people with epilepsy. These experts and many others help scientists see where new research and development is needed.
I'd like to hear from community users about what you think are the unmet needs - both the medical and social needs. Add your views here and we'll write this up to share with everyone!
Thanks for your help!
Epi_help
Introduction: At epilepsy.com, our greatest assets are the community members. We consider users like you to be the true expert in living with epilepsy and that's why we need your help. We would like to invite you to be a volunteer moderator or mentor for my.epilepsy.com.
Volunteer moderators will be asked to help members use the epilepsy.com features appropriately, facilitate proper use of the chat rooms and other aspects of the community, and provide feedback, suggestions, and opinions to the webmaster, moderator and resource specialist, and the Epilepsy Therapy Project Team.
The mentor role is still being worked out. I would hope that mentors could connect via my.epilepsy.com...
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