On Saturday, Oct 28, New York City awoke to drenching rain and wind storm. In spite of that, by 8:00 AM, more than 200 people attended our Continuing Medical Education Course: “Management of ALS: A Multidisciplinary Approach.” The symposium was funded by Muscular Dystrophy Association along with Sanofi- Aventis, Avanir, Athena and Bio-Scrip. The wet crowd represented many disciplines, including neurologists, rehabilitation specialists, nurses, PTs, OTs, speech pathologists, dieticians, social workers, hospice workers and so forth. Whoever is reading this newsletter should know there were a bunch of dedicated professionals at this conference! Dr. Lewis Rowland, mentor to many of us and a great ALS expert, opened the meeting by discussing “How to diagnose ALS.” At the early stages, ALS is not easily identified, and there are many diseases to sort out before the diagnosis can be reached. Dr. Carlayne Jackson, Professor of Neurology and Director of MDAALS Center at University of Texas at San Antonio, who is a leader in ALS patient care and management, gave a brilliant talk explaining how aggressive drug treatment can make a big difference. She focused her discussion on involuntary emotional expression disorder, drooling, and muscle stiffness. Next, Dr. Petra Kaufmann, a principle investigator of a NIH-funded, large, national multicenter trial of Co-enzyme Q10, gave a detailed summary of clinical trials, discussing how the trials are conducted and various issues involved with current drug development. The formal presentation was followed by panel discussions on issues impacting patient care. Dr. Paul Gordon, Associate Director of the Eleanor and Lou Gehrig MDA/ALS Research Center, who is another Principle Investigator of NIH-funded, national mutlicenter study of minocyline, raised the issue of cognitive impairment or rare dementia that may occur in some patients with ALS. Dr. Gordon pointed out such cognitive impairment may make caregiver’s role and our management of the patient very difficult. He is studying how to recognize and manage such patients at our Center and also collaborating with other national leaders in the field. Ms. Dallas Forshew, RN, Manager of the ALS Association and the ALS Center at University of San Francisco, discussed how families are physically and mentally burdened when they look after their loved ones. She pointed out the importance of independent meetings with families during the clinic visit, and the need for separate support groups for caregivers. Finally, Dr. Steven Albert, who was on our faculty at Columbia and led many important studies on end of life care and is now Professor of Epidemiology and Outcome Study at University of Pittsburgh, gave a talk on depression and quality of life in patients with ALS. He told us depression is not as common as we suspect. I moderated the panel and we concluded that there are so many issues it is crucial to pay close attention when seeing patients and dealing with this very difficult disease. After a quick lunch (no one dared to go outside because of the terrible weather), we happily continued with the three afternoon sessions. There were five different 70 minute workshops (with each workshop repeated twice) to allow flexibility of choice for participants. These workshops demonstrated hands-on devices and adaptive equipment or allowed for further discussion on selected topics based on case vignettes. The Respiratory Care Workshop was led by Dr. Robert Basner, and other faculty included experienced respiratory clinical specialists from LOW, Bill Simonds and Madeline Ogust, Dr. Jinsy Andrews, who was ALS fellow last year, and Dr. Norma Braun. Respiratory diseases, intervention and treatment were discussed along with demonstrations of equipment. Dr. Albert and Gabriela Harrington, our ALS nurse specialist, used case studies to illustrate how to approach death and how to make the stages easier in the The End of Life workshop. The Speech Therapy and State-of-the-Art Augmentative Communication session was led by our speech pathologist Winston Chen, and by Debra Zeitlin, a superspecialist of augmentative communication at Helen Hayes Hospital. Problems with swallowing and nutrition were addressed by Dr. Edward Kasarskis, Crispin Professor of Neurology, University of Kentucky and director of their ALSA Center and by our nutritionist, Kate Bednarz. Dr. David Markowitz joined them to demonstrate the technical procedure of tube feeding placement. I heard the team was so well organized many thought they had worked together for years. The Exercise, Activity of Daily Living and Adaptive Equipment workshop was expertly led by Jackie Montes, our physical therapist, who worked with Ray Chaput, an orthotist who comes to our center to help patients with braces and other devices, and Jenny Lieberman, a key occupational therapist from Mt. Sinai. A discussion about Involuntary Emotional Expression Disorder (sudden, uncontrolled crying or laughing), formally called Pseudobulbar Emotionality, was led by Dr. Jackson and myself, and I was fortunate to have this great teacher and speaker by my side. The final workshop was on Wheelchair and Assistive Devices for Mobility, led by Elaine Toskos from NYU’s Rusk Institute, an experienced occupational therapist, who specializes in wheelchair issues. Michael Sicolnofi , from Eastside Orthotics and Prosthetics, gave an excellent analysis of mobility. It was busy afternoon, but wonderful to have experts in the field describe what to do, how to do it and when to do it, while answering many of the questions that arise when seeing patients. ALS is a complex disease. Very effective medications are still not in our hands, but we still must provide the best care possible for our patients and assist their caregivers. We hope our course gave health professionals guidelines on providing excellent care and management for patients with ALS. We thank the great faculty who shared their expertise, and most importantly, all those who attended our conference. With such an enthusiastic audience, we agreed we should repeat the course every two years. Hiroshi Mitsumoto, MD