Several months ago I was contacted by the Epilepsy Foundation. They asked if I would be willing to participate in the pending Vigabatrin FDA hearing on their behalf.
Flattered as I was...Trevy's spasms had literally just resurfaced. And my AED knowledge was limited to ACTH. Not to mention my emotional status was fluctuating between basket case & zombie mommy. So I declined.
::smile::
But not without giving them the name of someone I felt would be a perfect fit. She has a virtual vault of Vigabatrin knowledge. And personal passion blended in as well. A perfect match.
As far as I was concerned that chapter was closed. And other than a stray thought here & there life zoomed onward until the FDA hearing became just a blurry crossing-my-fingers-for-approval-mixed-with-OVATION-apprehension event in the future.
Until...
a couple weeks ago I was contacted again.
These people are persistent!
::wink::
This time gave me pause. My zombie mommy days are less frequent. I think. And with Trev currently trialing Vigabatrin...I have a deeper understanding of the financial toll non-FDA approved drugs can have on the families forced to use them. I also have a personal idea of the "risks" parents are willing to take in the search for seizure freedom. These "risks" that are an intricate part of why Vigabatrin is not currently FDA approved.
After discussing this opportunity with those closest to me...and those who would be affected by my answer...
I finally said YES!
Soooooo...early January 09 I'll be boarding a DC bound plane. Facing my flight-fright head on. Because Trevy (along with all the other babies currently or in the future trialing Vigabatrin) is worth it!
Flattered as I was...Trevy's spasms had literally just resurfaced. And my AED knowledge was limited to ACTH. Not to mention my emotional status was fluctuating between basket case & zombie mommy. So I declined.
::smile::
But not without giving them the name of someone I felt would be a perfect fit. She has a virtual vault of Vigabatrin knowledge. And personal passion blended in as well. A perfect match.
As far as I was concerned that chapter was closed. And other than a stray thought here & there life zoomed onward until the FDA hearing became just a blurry crossing-my-fingers-for-approval-mixed-with-OVATION-apprehension event in the future.
Until...
a couple weeks ago I was contacted again.
These people are persistent!
::wink::
This time gave me pause. My zombie mommy days are less frequent. I think. And with Trev currently trialing Vigabatrin...I have a deeper understanding of the financial toll non-FDA approved drugs can have on the families forced to use them. I also have a personal idea of the "risks" parents are willing to take in the search for seizure freedom. These "risks" that are an intricate part of why Vigabatrin is not currently FDA approved.
After discussing this opportunity with those closest to me...and those who would be affected by my answer...
I finally said YES!
Soooooo...early January 09 I'll be boarding a DC bound plane. Facing my flight-fright head on. Because Trevy (along with all the other babies currently or in the future trialing Vigabatrin) is worth it!
Comments
That's fantastic!!
You'll do a fabulous job presenting and all babies needing/using Vig. will benefit.
Thank you & thanks to your family for giving you up a little so that you can travel.
Shanna- wanna fly out too?!?
xoxox,
sharon
You are going to be a busy busy lady!! New house and now this! Wow! I am seriously impressed!
Want to really get going on those other projects. Really itching to do some dev, but with the holidays, just haven't had time.