Cedars-Sinai Experts in Lou Gehrig's Disease Present Conference for Patients and Families

April 19 Program Will Cover the Latest Advances in Research and Treatment for the Progressive Neurodegenerative Disorder


Los Angeles - April 11, 2014Robert H. Baloh, MD, PhD, director of neuromuscular medicine and the ALS Program at Cedars-Sinai will be the featured speaker April 19 when experts in the research and treatment of Lou Gehrig's disease present a conference for patients and families.

Update on ALS Research and Treatment, a free patient and family conference presented by Cedars-Sinai's Motor Neuron Disease Research Center, will be from 10 a.m. to 3 p.m. April 19 in the Advanced Health Sciences Pavilion's Plaza Level, 127 S. San Vicente Blvd., Los Angeles. Parking is available in lot P4. Because space is limited, reservations are required. Call 310-423-1525 to register.

The incurable disease, also called amyotrophic lateral sclerosis, or ALS, attacks muscle-controlling nerve cells – motor neurons – in the brain, brainstem and spinal cord. As motor neurons die, patients lose the ability to initiate and control muscle movements. Weakness leads to paralysis, and death usually occurs within five years of diagnosis.

Cedars-Sinai's ALS Program provides comprehensive care, the most advanced supportive treatments and a research component that brings together doctors and scientists from multiple areas of expertise to focus on the disorder. Researchers receive funding from the National Institutes of Health and ALS advocacy groups.

Baloh will discuss recent research advances and describe how the disease is being modeled through the use of stem cells. In a recent study, researchers led by Baloh and Clive Svendsen, PhD, director of the Regenerative Medicine Institute at Cedars-Sinai, created in a lab dish diseased neurons derived from patients' skin cells, analyzed the specific genetic defect and "treated" it with genetic material to block its damaging effects. This type of study provides "proof of concept" in the lab that a treatment is likely to work – an important step in moving basic research to clinical trials.

Geneviève Gowing, PhD, lead scientist in the Svendsen Laboratory, will update conference attendees on the development of stem cell therapies for the treatment of ALS. The Regenerative Medicine Institute in 2012 received a $17.8 million grant from the California Institute for Regenerative Medicine to develop stem cell treatments, and the U.S. Department of Defense recently announced a $2.5 million award to fund gene therapy studies.

Richard Lewis, MD, director of the Electromyography Laboratory and co-director of the Neuromuscular Clinic, will speak on the investigational use of diaphragmatic pacing for patients with ALS. The disease's effects usually start in the limbs and move to other muscles. The most common cause of death is respiratory failure when the diaphragm muscles become incapacitated. Cedars-Sinai is participating in a multicenter randomized clinical trial to determine if the diaphragm pacer is beneficial for ALS patients. Lewis is Cedars-Sinai's principal investigator in this trial and also leads a clinical trial studying resistance and endurance exercise in ALS.

Peggy Allred, PT, DPT, who oversees Cedars-Sinai's ALS clinical research program, will talk about patient participation in clinical trials – what's available and how to decide whether or not to become involved.

Ashraf Elsayegh, MD, director of the Medical Intensive Care Unit in the Division of Pulmonary Medicine at Cedars-Sinai's Suzanne and David Saperstein Critical Care Tower, a member of the ALS treatment team, will present information on respiratory management in the care of patients with ALS.

Tara Funari, certified genetic counselor, will discuss the genetics of ALS and options for genetic testing.

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