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Wednesday, October 10, 2012

The Third International Symposium on Dietary Therapies for Epilepsy is now over and was an amazing success. Most of the over 400 attendees for the “professional” days and over 100 families to the Saturday “Family Day” believed that this was a huge turning point in the history of the diet. Incredible collaborations were forged and speakers who were previously not well-known to the ketogenic diet community attended and were inspirational. The conference achieved its goal of broadening the appeal of metabolism based therapies beyond epilepsy to other diseases.

After a brief introduction by Jim Abrahams, the founder and Executive Director of the Charlie Foundation, the meeting started with a bang by a stunning lecture by Gary Taubes (www.garytaubes.com) on how many of the recent diseases of civilization may be due to excessive use of refined sugar and carbohydrates, including metabolic syndrome, diabetes, and possibly cancer. Dr. Matt Vander Heiden from MIT and Harvard then spoke about cancer cell metabolism, including how metabolism could be a pathway to affect growth. 

Presentation

Thursday was the busiest day of the meeting, with the morning session chaired by Dr. Adam Hartman and focusing on the myriad and growing non-epilepsy indications for dietary therapies. Short lectures covered the use of diets for autism, traumatic brain injury, Alzheimer’s disease, ALS, pain, cancer, and lastly diabetic nephropathy (kidney disease). Most of these talks reported on research from preliminary animal models, but some (autism and cancer specifically) already have some human data to support their use. During this session, the room was so crowded with neurologists, dietitians, and scientists that extra chairs had to be brought in to accommodate attendees! 

Attendees

Thursday afternoon created a smaller, group setting with 3 “breakout” sessions devoted to basic science, clinical/nutritional aspects of dietary therapy, and a session on the growing use of diets for adults. I moderated the adult session, which brought together experts from adult epilepsy diet centers in the USA, United Kingdom and India, as well as two patients with epilepsy who have had dramatic success using dietary treatment. Lastly, Jeff Volek RD PhD from University of Connecticut provided important tips for keeping adults compliant, healthy, and successful on low carbohydrate diets (photo below).

Presentation

A poster session including 52 abstracts from researchers worldwide then closed the evening. These presentations spanned the spectrum of ketogenic diet therapy, with information on genetics, improving cholesterol, using a team approach, use of ketogenic formulas, and benefits for unique epilepsy conditions. Poster presentations were from over 30 countries, many of whom put their own “mark” on a map of the conference using push pins (photo below)! 

Poster
Map

The professional meeting ended Friday, with lectures on using the diet as TPN (total parenteral nutrition – completely intravenously), ideal supplements, Dravet syndrome, GLUT-1 deficiency syndrome, autism, and I presented the evidence for the use of the diet emergently for status epilepticus. http://www.epilepsy.com/epilepsy/keto_news_mar10 After a final brainstorming session, in which tackling issues such as funding dietitians, researchers, and making the diet more available were covered, the meeting came to a close. An author book signing and cooking demonstrations were held for departing researchers and parents who were arriving for Saturday’s Family Day. 

Book Signing

Friday night was the occasion to celebrate. A gala celebration and fundraiser was held by the Charlie Foundation to honor Meryl Streep, who starred in the movie “First Do No Harm” in 1994. This movie helped launch the popularity of the ketogenic diet in the USA and abroad. Jeff Garlin from Curb Your Enthusiasm was the celebrity host for the evening, which saw speeches by patients and former ketogenic diet children including Charlie Abrahams himself as well as bluegrass music by The Bankesters, (www.bankesters.com) who have also been touched by the benefits of the ketogenic diet. These pictures below do not do the evening justice – please visit the Charlie Foundation Facebook page for more! www.facebook.com/TheCharlieFoundation 

Meryl Streep

 Jeff Garlin with Michael and Gerry Harris from the Carson Harris Foundation

(Jeff Garlin with Michael and Gerry Harris from the Carson Harris Foundation)

Saturday ended the meeting with an all-day “Family Day” devoted to helping families meet and learn from each other, as well as many of the dietitians and neurologists who stayed an extra day after the conference ended. Roundtables were devoted to adults and diets, Dravet syndrome, siblings, and diet variants.

This meeting would not have been possible without the support of the Charlie Foundation as well as many sponsors including Nutricia, Chicago Sun-Times, Matthew’s Friends, Lundbeck, Vitaflo, Sigma-Tau, Epilepsy Therapy Project, Carson Harris Foundation, Athena, Atkins, Protocol for Life Balance, Epilepsy Cure Initiative, Solace Nutrition, Anita Kaufmann Foundation, Dravet Syndrome Foundation, Epilepsy Foundation Greater Chicago, CURE, GLUT1 Deficiency Foundation, ICE alliance, LGS Foundation, TS Alliance, Johns Hopkins Hospital and LeBonheur Children’s Hospital. Review articles based on this meeting will be published this spring in the Journal of Child Neurology, so be on the look out. The 4th International Symposium on Dietary Therapy will be September 2014 in Liverpool, United Kingdom.

See you there!

Authored by: Eric Kossoff MD
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