Epilepsy Foundation

Day One: The American Epilepsy Society Annual Meeting

I'm here at the 65th annual American Epilepsy Society meeting in Baltimore (Charm City). It's a gorgeous day--crystal clear weather and only slightly chilly.

The annual AES meeting is a high point of the year where 4,000 scientists, physicians and other health care professionals in the field of epilepsy convene to learn about the latest advances in the treatment of epilepsy.

I already attended an excellent presentation called Neurostimulation--Emerging Devices for Epilepsy. The news is promising as the field of neurostimulation is experiencing unprecedented growth. Two treatments are awaiting FDA approval and there are promising developments in the field of seizure alarm systems, which could one day recognize and predict seizures. 

Two of the devices, the EpiAlert and the SmartWatch, are funded in part by the Epilepsy Foundation.

I'll be attending an FDA Town Hall meeting tonight. FDA will be dicussing issues related to generic antiepileptic drug equivalence. They will open the floor to questions and suggestions about AED equivalence, so it should be an interesting forum. I'll have updates tomorrow.

I'm very excited to attend the 9th Annual Judith Hoyer Lecture in Epilepsy tomorrow morning (12/3). Composer Cynthia Folio created a contemporary musical piece, When the Spirit Catches You, that portrays her daughter Lydia's seizures. Steven C. Schachter, M.D., a Harvard epileptologist, who has long had an interest in art and epilepsy, is this year's featured Hoyer Lecture speaker.

The Hoyer Lecture, Psychosocial Aspects of Epilepsy: State of the Art, begins at 8:45 a.m. on Saturday, December 3 in the Baltimore Convention Center. The illustrated lecture and musical performance will follow at 9:30 a.m. The event is free and open to the public.

On to the next presentation--more soon!

Check out epilepsyUSA contributor Gordy Slack's blog, as well as my wonderful colleague Shelly Williams' excellent blog on the event.

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Comment by Lisa Boylan on December 4, 2011 at 9:05pm

Hey Bryan--I thought of you early and often during this presentation, quite honestly. He spoke about so many things you have brought to the fore. Here is a link to my blog on it, then a link to epilepsyUSA's contributor Gordy Slack on it. Lots of thoughtful reactions and it was recorded, so we'll keep an eye out for a link for that.

Comment by bryan farley on December 4, 2011 at 8:56pm

Lisa,

The Hoyer Lecture seems like something I would have enjoyed. Do you have any good links to learn more about what I missed?

BF

Comment by Lisa Boylan on December 4, 2011 at 9:20am

Hi Ginny--I just realized you weren't commenting on my post on the Hoyer lecture! Check it out if you get a chance. I was really impressed. Your additions and added observations are great. Thanks, as always.

Comment by Lisa Boylan on December 4, 2011 at 9:17am

Hi Ginny--thanks SO MUCH for your excellent addition and personal insights into this. That is so touching and amazing about your son's art and how therapeutic music and art were, and are, in your lives. Thanks also for bringing up more aspects of Dr. Schachter's lecture. I sat here last night and I wanted to put in everything, because it is all so spot-on and important, but I realized I had to pick and choice for this post. Maybe I can do a Part II!

I do hope we will cross paths. I managed to connect with Ilene from Hope for Hypothalamic Harmartomas. We'd been emailing back and forth and I was down in the exhibit hall and we ran into each other. In a conference with 4,000 people--that's pretty good. Will you be there Monday and Tuesday as well? I will.

Comment by MrsLinkgetter on December 3, 2011 at 11:09pm

Missed you at the Hoyer lecture, but it was so amazing! Dr Steven Schacter did such an amazing task in bring the art of people with epilepsy to the audience while he spoke so eloquently about patients and the impact. He talked about the co morbitities as well and how they rob people of so much. Even before this Nico From the ILAE (sorry, cannot recall his last name), stated that he wants to put them ALL out of business by finding CURES. He was in the Vision 20 20 meeting. He was right on target with the legislative gaps, the education gaps, funding gaps, diagnostic gaps etc etc and seemed as frustrated as all of us. Back to Dr Schacter, his insight and perspective is so marvelous and i do believe he passed this along thought the artwork. He is working on another book of art now. He also brought in a composer who did a piece, debuted today with a small orchestra, with a film narrated by her daughter, called, 'WHen the spirit catches you, you fall down" I was just amazing. I had a chance to speak to the girl and mom to thank them later for how well they gave us this inside view. I had the honor to thank Dr S for providing that inside view so tenderly from a mother and person with epilepsy. I gave him a picture of one of Sam's suns and the CD with Sam's   Expressions of COurage Winner on the cover. A musician had recently chosen that piece as his cover art after Sam's death. Music and art are very therapeutic they are in my life and were in Sam's. Dr S expressed this so well in his talk. THis shiould be available in the Symposia on the AESNET site around march. I will come back with that link then. 

Comment by Lisa Boylan on December 3, 2011 at 8:19am

Hi Ginny--that is great! I'm so happy. I know you've long held an interest in attending this conference. I'll be at the Hoyer lecture this morning. I hope we can connect. All best, Lisa

Comment by MrsLinkgetter on December 2, 2011 at 8:47pm

HI Lisa, I will also be at the Judy Hoyer Lecture. I attended the Basic Science lecture today and it was also very good. I was at the SIG Vision 20~20 tonight then was invited out with other advocates including Susan Axelrod, Carmita Vaughn,  Seth Wohlberg, Warren Lambert, Orrin Devinsky, and many more. What a pleasure to get to meet these people who have paved the way to epilepsy awareness so we can do so much more. I look forward to so much more tomorrow! 

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