Director's Message

Since the founding of CNS almost 20 years ago, there has been a remarkable change in health care. Whereas patients were free to choose their physician and have unlimited access to specialists, the majority of the population is now enrolled in managed care. In this environment, non-profit foundations like CNS have a lot to offer patients and their families. At CNS, the "bottom line" is measured by the number of people that we are able to help and the progress that is made in researching the cause and treatment of neurologic diseases such as amyotrophic lateral sclerosis and multiple sclerosis.

It is my belief that CNS has enjoyed considerable success in fulfilling its commitments. With the move to the Scripps campus, we have expanded our clinical research effort. As a result, we are now conducting studies in the area of epilepsy, stroke and pain, in addition, to our longstanding research on the treatment of ALS and MS.

One exciting outgrowth of CNS's effort has been the issuance of six United States patents based on discoveries made at CNS. Ultimately, the National Institutes of Health awarded a grant to support the commercial development of these products which were licensed to Avanir Pharmaceutical Corporation. Last year the first nationwide trial proved the drug is highly effective for treating excessive emotionality that often accompanies ALS. The drug is now being tested in multiple sclerosis and neuropathy patients. If these studies are successful it is hoped that the drug will be licensed by the FDA. If this occurs, CNS will be one of the few institutions in the world to have developed a treatment for a neurologic disorder(s). This will be a milestone.

All this would not have been possible without the longstanding support of patients, families, the community and our board of directors.

With best wishes,

Richard A. Smith, M.D.

Move to Scripps Campus

Although it's no longer news, the relocation of CNS to the Scripps campus is a major mile stone. It was the natural outgrowth of our emphasis on patient care and experimental treatment. It was our good fortune to be able to design our own space which looks out over the University of California. As a result of the move, CNS has been able to recruit additional physicians who share CNS's commitment to patient care and clinical research.

Current Medicine

No field in medicine is progressing faster than is the understanding of neuromuscular disease. Over the last five or so years, the cause of diseases such as muscular dystrophy and myotonic dystrophy have been elucidated. About five years ago, CNS director, Director Richard Smith and Dr. Jonathan Licht, head of Clinical Research, were asked to author a chapter which chronicled the breathtaking advances in understanding and treating neuromuscular disorders. The initial chapter was published as part of a 4 volume text book, covering all fields of medicine. The chapter has now been revised and published in a journal format. Each month, several areas of medicine are reviewed. The publication is also online and can be referenced through the world wide web.

Southwestern ALS Treatment Group (SWAT)

The purpose of the Southwestern ALS Treatment Group is to advance the cause of ALS research and treatment. The participating Centers are first and foremost dedicated to providing care for patients and families who have been affected by ALS. While it is widely believed that advances in therapy will change the outcome for patients with ALS their well being is markedly improved by currently available programs of care which addresses mental outlook, nutrition, physical and respiratory therapy ad the use of assistive devices. At a time when medicine is becoming more impersonal we strive to individualize the care given to patients and their families.

Along with the emphasis on compassionate care, SWAT physicians can provide expert opinion regarding the diagnosis of ALS and related conditions. Participating physicians are recognized authorities who have years of experience in the diagnostic evaluation of patients with neuromuscular disease.

Progress has been made in understanding the molecular basis for a number of neurologic diseases. In fact, the genetic basis for one form of familial ALS has been discovered and many of the mechanisms responsible for neural degeneration have been elucidated. Based on these ideas, new forms of therapy are being tested, first in the laboratory and then in humans. However, in the instance of diseases like ALS which affect a small minority of the population clinical research requires coordination between Centers. Toward this end the participating Centers have set up a joint data coordinating unit. This may be accessed to identify patients or to manage data generated in clinical trials. Accordingly the Southwestern ALS Treatment Group is ideally suited to conduct clinical research.

For further information, contact one of the participating centers.

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