Skip to main content

IS community announcement

The Study That Can Unlock The Mysteries of Epilespy



What: The Study That Can Unlock The Mysteries of Epilepsy - hosted by BlogTalkRadio will be a segment focusing on the The Epilepsy Phenome/Genome Project which parents of IS children were encouraged to participate in...with the hopes of providing invaluable information for families living with epilepsy now & into the future.



When: Wednesday November 5th from 8 -9 pm. EST


******************************

Just follow the hyper links to find the full information

Comments

JSmith5780 said…
Sure... had to show me up with a better post than mine ;)

No really, it's more important to publicize it!
Danielle said…
I totally stole the info from you! *wink*

...danielle
I'll have to try to catch this one. Thanks for letting us know!!!
JSmith5780 said…
Honestly Shanna- Kay may not be eligible for the study, Trevy either. I think they are looking for IS cases with no known cause. If theya re "blaming" Kay's IS on the TS, I believe she is ineligible. Danielle, you'd have to ask about the ARX thing and see what they say. We have completed the interviews, but we still need to complete the bloodwork, which reminds me that I need to call NYU.
Shanna-
If you click on that link the program is archived towards the bottom. I forgot it too!!! I'll have to listen to it later....got an appt this am

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

I was talking about you today

That's right. You. Sitting there glued. To the computer screen. Getting your Trevy fix. You who hasn't been able to tear your eyes away. The one who checks back here gobs of times a day. Hanging on every post. Especially the dripping with drama or funny posts. Because you need to either laugh or cry alternately. Just like me. And somewhere...sometime...somehow...over the course of these past couple years... ...you found yourself here. Reading about me. About my family. About my Trevy. And slowly you were drawn in. Until you couldn't help yourself. You were head over heels. Unashamedly addicted. Maybe we connected in a support forum. Perhaps we're old college friends. I know we have family following. Hi guys! Some teachers and therapists. Maybe even a medical professional or two. Perhaps our kids play ball together. We might be FaceBook friends. Or you could be a friend of a friend. Even a complete stranger. But to us... you each have a very special pla...

runaway

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.