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A clinical focus group on epilepsy will convene on October 27th &28th in Boston
BOSTON, 19 October 2009 - Millions of Americans and their families live every day with the immense challenges of epilepsy. Seizures that strike unpredictably at any moment and cause injury or even death; treatment side effects that continually impair thinking, emotions and coordination; related medical and psychological conditions; limitations in learning, driving and employment; and social stigma are just a few of these many challenges.
We need new treatments. We need new diagnostic tests to be able to choose the best treatments. We need new approaches to thinking about
treatments. And we need people living with epilepsy to keep us focused
and on track.
That's why physicians, engineers and others are convening at the upcoming CIMIT Innovation Congress to hear from people directly impacted by epilepsy.
In her keynote address, Susan Axelrod will talk about her personal experience with epilepsy, and the important roles that patients and families have in defining the unmet needs, participating in clinical trials and supporting groundbreaking research. Susan poignantly describes her family's struggle with epilepsy during her October 25 interview with Katie Couric on 60 Minutes.
In addition, a panel discussion will explore ways to accelerate the movement of new technologies from academic laboratories to patient care. I know how difficult it can be to introduce new technologies for epilepsy therapy, yet the same challenge holds true for all diseases -- cancer, heart disease, and more. Patient advocates are critical voices in these endeavors.
We can all make a difference! Can you help?
Chief Academic Officer, CIMIT
CIMIT blog is a publication of the Center for Integration of Medicine and Innovative Technology
As I watched Susan and David Axelrod on "60 Minutes" the other night, I was of two minds. First, I was, of course, happy to see a disease, which doesn't usually get enough recognition, given significant air time.
But on the other hand, I was disappointed that, as one writer, health writer Alison Rose Levy, pointed out in her Huffington Post column, titled “Hold the MSG: Food Triggers for Epilepsy and Other Neurological Illnesses,” it is a shame that “proactive, preventive health care strategies that might help to reduce incidence of epileptic attacks were overlooked” by the Axelrods on the show.
This was particularly troubling to me, since I know for a fact that the Axelrods are very much aware of at least one dietary strategy, the Ketogenic Diet, which is known to help approximately 70% of the children with epilepsy who try it. Unfortunately, I believe their daughter Lauren was one of the 30% the diet did not help. Even so, since this diet has such an excellent track record, and has been used successfully since the 1920s in institutions such as Johns Hopkins, I believe it should be included in all serious discussions of epilepsy treatments. Yet the Axelrods didn’t mention it on "60 Minutes," or in a recent "Newsweek" story, where they were quoted.
I am so impressed with the Ketogenic Diet that I am featuring it, and one of its tireless champions, Jim Abrahams, in my upcoming book, “Four Lifesaving Medical Treatments That Could Change Healthcare.”
If the Axelrods didn’t know about the Ketogenic Diet, that would be one thing. But Susan Axelrod lists Jim Abrahams as an “honorary board member” of her organization. In addition, she has included an article by him in her organization’s publication as recently as the Spring of ’08. And Mr. Abrahams includes a link to CURE on his Charlie Foundation website.
In our conversations, Mr. Abrahams expresses the highest praise for Ms. Axelrod. Why, now that she has this wonderful public platform, does she NOT inform the world about one dietary treatment that has helped so many children with epilepsy? I hope this was just an oversight, and that she will mention it in the future.
Julia Schopick
www.HonestMedicine.com
Posted by: Julia Schopick | 29 October 2009 at 06:17 PM
My question is simple...what is the single most exctiting research program in the world that is directed at the cure or highly effective management of epilepsy?
Posted by: Walter E. Horton Jr., Ph.D. | 28 October 2009 at 10:35 PM