Monday, November 10, 2008

CURE for Epilepsy

OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.

But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.

For several years now, I have had this logo and link at the bottom of my page on Federal Review.

Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.

This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.

Crossposted on FederalReview.


Holly said...

This is the first time I am reading this blog- I didn't realize that about the CURE founders being behind the Obama campaign.. that might be some great news, huh!? I agree.. that's some redistribution of wealth I could get behind as well. :)
Looking forward to reading more...

Lindsey W. said...

Hello Holly!

I've been going through your blog and I really wanted to comment on this post! That really is encouraging news! I'm so hoping that something positive will come of it! In the 14 yrs. that I've had epilepsy, I'm just now getting started on finally advocating for myself and hopefully for others too (I can't believe it took me this long). But thank you for such a great site


Anonymous said...

Heven't you never tryed the ketogenic diet?...

Maggie Mendus said...

This past October I had the pleasure of meeting Susan Axelrod, as she and her husband have a farm near where we live. In addition, her family home (her father's house) is in our neighborhood. We moved in after Susan and David left the neighborhood, but I just wanted to say that we found Susan an absolutely tireless epilepsy advocate. Over dinner she asked nothing of us other than to hear my story. She asked if I'd be interested in meeting Lauren, her 31 year-old daughter who has had epilepsy since she was seven months old. I have yet to do that, but I look forward to it. I highly recommend taking a look at CURE's website ( I have fortunately been seizure-free for seven years, two months and six days, and I count every one of those days as a blessing. Come visit my blog at I am interested in reading more of yours.

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