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Distributed without charge by the Charlie Foundation, this video offers a first-hand account of the Ketogenic Diet by parents and patients. The program takes a roundtable discussion format with parents sharing their initial hardships and the diet's effect interlaced by comments from the children themselves. While many of the parents admit the difficulties in preparing the food, all of them stress the benefits involved, and the patients themselves seem to share the view. Viewers should keep in mind, however, that the Charlie Foundation is a strong advocate of the diet and focuses primarily on its successes rather than its failures. The diet is not a miracle cure for everybody. Having said that, the video still serves as an important educational tool for parents and will be of benefit to those who are considering the Ketogenic Diet for their children. If you would like to obtain a copy, write to Jim and Nancy Abrahams, The Charlie Foundation to Help Cure Epilepsy, 1223 Wilshire Blvd. #815 Santa Monica, CA 90403-5406

"The Multiple Faces of TS"
           [From the Winter 97 edition of Dialogue, Volume I, Issue 3]

"Bleak" is the word that comes to mind in watching this video of a lecture given at the 20th Anniversary International Tuberous Sclerosis Symposium in October, 1994. While it is a privilege to watch Dr. Manuel Gomez, professor emeritus at the Mayo Clinic and one of the leading physicians for tuberous sclerosis complex, the content that he addresses could be especially tough on newly diagnosed individuals and their families. He begins the lecture with a slide showing how the survival rate of TS individuals is consistently lower than normal. He then breaks down the leading causes of death among them- out of 48 patients, 18 died from central nervous system related causes and 12 from renal causes. Dr. Gomez's vast experience is evident from his reference to actual clinical cases to reinforce each of his points. A case about a girl with severe seizures whose EEG appeared normal is particularly intriguing. It wasn't until her death that doctors discovered she had more brain tumors than the MRI and CT scans showed. There is no doubt about the objectivity and thoroughness of the presentation, but one must remind oneself that early death is not an absolute and that many TS individuals have led full lives without such severe complications. In fact, his conclusions about TS related causes of death, introduced in the beginning of the lecture, are based on a small number of cases. This video is recommended for those who will be able to maintain scientific objectivity.

"Genetics of TSC"
           [From the Fall 96 edition of Dialogue, Volume I, Issue 2]

"You are now hot science," announces Francis Collins, M.D., Director of the National Center for Human Genome Research, in the beginning of a taped lecture of the 1994 international TS Symposium. He is speaking, of course, about TS. In this entertaining lecture, Dr. Collins gives us a brief tour of the world of genetics. He starts by explaining that a gene " is a stretch of DNA that carries information" and that the mission of the Human Genome Project is to find out what they do and where they are. He then explains the process of gene mapping. Tracing the history of gene research of cystic fibrosis, Dr. Collins suggests that TS research will likely follow in its successful footsteps. At the same time, however, he also directs our attention to the harsh reality of the project's budget. Jokingly, he tells us that the 1.3% budget allotted to his program by the National Institutes of Health is "equivalent to a bathroom on the space station." If you want to understand the nature of genetic research as it relates to TS, this is the perfect video. However, be prepared to watch the video twice for a full understanding. The first time will only give you a general overview.

"Overview of TS"
           [From the Summer 96 edition of Dialogue, Volume I, Issue 1]

Do you know what confetti lesions and ash leaf spots are? Do you ever wonder about the likelihood of having a second child with TS if your first child has the disease? Dr. Steve Roach from the University of Texas addresses these and many other questions in the taping of the NTSA regional meeting. Although the video is three years old, it is a comprehensive overview that reviews each of the TSC manifestations. Aided with MRI and CT scan prints with arrows pointing to the area under discussion as well as charts, graphs, and written definitions, Dr. Roach starts with non-neurologic aspects (cutaneous, ophthalmologic, cardiac, renal, pulmonary), moves on to neurologic aspects, and concludes with a short discussion of TSC genetic findings. In each of the non-neurologic categories, he addresses questions such as how often should one have the area examined, the likelihood of finding the manifestation, and what to watch out for. "You have to be vigilant about [kidneys] pretty much forever," advises Dr. Roach, for example. In his discussion about the neurologic aspect, he makes an interesting observation that generally speaking, the frequency of seizures in patients is proportional to the number of lesions in the brain. For those who are not familiar with TSC or who have questions about it, this video is an easy-to-understand option.

If you are interested in viewing any of the above videos, you can rent them from NTSA for a two week period for a $5 rental fee and a $20 refundable security deposit. NTSA will mail the tape to you promptly. The purchase price for all videos is $14 - $25. Click here for a list of video titles.