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Center models state-of-the-art care and caring

     In this issue of Momentum, we turn our spotlight on the Department of Pediatrics, its evolution, and how it is now working to create the “ideal patient experience.” This is a goal I have challenged the department to meet in the near future. It is a goal that every clinical service at Emory must meet to fulfill our ambitious objectives for transforming health and healing in Vision 2012.
     In this vein, I recently spent half a day at the ALS Center at Emory. Amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease, is a devastating disorder affecting the function of nerves and muscles in the body. It progressively robs patients of muscle control and movement, even as their cognitive function remains intact.

      Having spent several hours with Jonathan Glass, director of the ALS Center, and with many of his staff and a few of his patients, I can say without hesitation that it is a model not just of the ideal patient experience but of the multi-disciplinary and research-intensive care that distinguishes an academic health center like ours from most community-based services.
     Glass, a professor of neurology in the School of Medicine, works closely with a broad range of other patient care specialists, including nurses, physical therapists, social workers, and dedicated interns and volunteers. Their primary focus is on the patient and on helping patients and their families manage this difficult disease. You may have to work a little to find the center. It occupies a relatively small area in The Emory Clinic “A” building, the clinic’s oldest facility. The narrow hallways barely accommodate the flow of wheelchairs and people. But within these modest confines one enters a center of hope and caring.
     There, providers are on a first-name basis with patients and families. Hugs are the preferred greeting. People come from across the Southeast for their regular appointments. One patient described the three hours it takes his wife to get him washed and dressed and
the four hours of driving she does to ensure he makes his appointments. Many others had similar tales.
     But it’s not just the caring atmosphere and personal relationships that bring patients here.
     Glass and other specialists are dedicated to solving the many mysteries of ALS: what causes this debilitating disease and why some patients experience more severe symptoms and a more rapid decline than others. To find answers, they are conducting research at the penetrating point of the cutting edge of molecular genetics.
     One major effort is a five-year project in collaboration with other researchers and the Icelandic genomics company deCODE genetics. During the study, scientists are collecting blood samples from up to 500 ALS patients and their parents. Then, using thousands of DNA markers developed by deCODE, they hope to identify genetic sequences throughout the human genome that form a DNA “fingerprint” of ALS patients and their parents. With these fingerprints, they may be able to determine whether inherited genes increase susceptibility to developing ALS and then develop medications to treat or prevent the disease. Glass is also involved in the search for environmental factors that play a role in ALS and other motor neuron diseases.
     During my visit to the center, I saw several patients and families as they were given personalized and caring attention. They received accurate information about the progress of their disease and the expected efficacy of treatment. They were also able to learn alternative strategies and new devices and approaches to help manage their illness.
     Watching this, I could not help but feel that hope is indeed a muscle and that Jonathan Glass and his staff understand something very fundamental about the science and the strength and the care that lies at the heart of the ideal patient experience.





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