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N of Small Trial with LBSL

May 3, 2023 2:00-3:00 pm US EST



Ali Fatemi, MD, Chief Medical Officer at Kennedy Krieger Institute

Ali Fatemi, MD, is the Chief Medical Officer at Kennedy Krieger Institute, a pediatric neurologist and the director of the Division of Neurogenetics and the Moser Center for Leukodystrophies, and an investigator at the Hugo W. Moser Research Institute at Kennedy Krieger Institute. Dr. Fatemi is also professor of neurology and pediatrics at Johns Hopkins University.



Beth McGinn, Founder & Executive Director, Cure LBSL

Beth is a communications expert with 20 years of experience in political campaigns and public policy. She worked as a spokesperson for several members of Congress and congressional committees. Today she is Vice President of Communications for the American Road and Transporation Builders Association in Washington, DC. Beth and her husband Mike McGinn also lead a patient advocacy organization known as Cure LBSL which they launched in 2013 after their then three-year-old daughter Ellie was diagnosed with the ultra-rare and degenerative brain and spinal cord disease.





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We envision a future where individualized medicine centers around the world routinely offer patients customized treatments targeting their condition’s underlying genetic cause.




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