Ask the Doc: Q & A with Edward Kasarskis, MD, PhDEdward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Survival and ALS Q: I’ve read that many people with ALS are now living longer. Is that true? A: Yes, I am very pleased to say that people with ALS are, on average, experiencing a less rapid decline in their muscle function and living longer than we previously thought possible. But science is still asking: why do some people survive longer than others? If you can figure out an answer to this question, then you might be able to develop a drug that would have the same protective effect for all ALS patients. To this point just last year, two teams of researchers discovered some clues about genetics that appear to influence survival time in people with ALS. One study published in the journal Nature Medicine showed how a low level of the receptor, called EphA4, is associated with people who live longer with ALS than others. Another recently-published study, this time in the journal Nature, identified a new ALS gene (profilin-1) that appears to work “collaboratively” with EphA4. These two studies suggest there may be a molecular pathway in neurons (nerve cells) that helps explain not only which people are susceptible to ALS, but also how rapidly their conditions might evolve. My colleague, Dr. Robert Brown, Chair of neurology at the University of Massachusetts Medical School, was a study co-author. He says these findings are particularly exciting because they suggest that suppression of EphA4 may be a new way to treat ALS. But while exciting studies like these continue, other research has shown that supportive care as provided by a multi-disciplinary team at an ALS Clinic -- measurably extends function and life for people with ALS. In fact, the American Academy of Neurology ALS Practice Parameters has found that multidisciplinary clinics optimize healthcare delivery and quality of life, and prolong survival. Research shows that the clinics provide an extra 1 ? years of additional survival. Enthusiasm for these clinics is appropriate; they really are that good. So how do these clinics do this? In the specialized multidisciplinary ALS clinics, people with ALS get comprehensive care from a coordinated team that includes the ALS neurologist, a physical therapist, an occupational therapist, a speech pathologist, a dietician, a social worker, a respiratory therapist and a nurse case manager. By seeing all these disciplines during a single visit, people with ALS and their families get their concerns identified early and thoroughly addressed by the team. This is about much more than simple convenience, although that is a real benefit to the patient and family. The team works collaboratively, pooling the individual expertise, to solve problems. At the risk of overstating the case, there is no problem the team at an ALS Clinic hasn’t seen. And the team members believe all problems have solutions. The multi-disciplinary team approach also helps people with ALS and their families know what to next expect what is around the corner in six months or so -- so they can be fully educated and prepared. It is my belief that the pooled expertise in the clinic can identify the next potential problem, suggest a solution, and prevent catastrophic problems from developing. For information about how to find an ALS Clinic or ALS Certified Center near you, please visit our website If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. |
