MDA Clinic Directors and Researchers Gather for Three Days of Talks

by Quest Staff on April 1, 2009 - 4:09pm

QUEST Vol. 16, No. 2

Nearly 600 conferees gathered at the South Point Hotel in Las Vegas Jan. 26-28, 2009, for the MDA National Clinic Directors’ Conference, where a number of speakers presented research and care updates on Duchenne muscular dystrophy, myotonic dystrophy, facioscapulohumeral muscular dystrophy, limb-girdle muscular dystrophy, congenital muscular dystrophy, Friedreich’s ataxia, spinal muscular atrophy, acid maltase deficiency and ALS.

Carsten Bonnemann, an MDA research grantee who co-directs the MDA clinic at Children’s Hospital of Philadelphia, talked about the similarities and differences among various types of congenital muscular dystrophy.

Watch a video of Carsten Bonnemann

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Susan Iannaccone, who directs the MDA clinic at Children’s Medical Center of Dallas, emphasized the need for multidisciplinary care for children with spinal muscular atrophy.

Watch a video of Susan Iannoccane

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Katherine Mathews, who directs the MDA clinic at University of Iowa Hospitals & Clinics in Iowa City, reported early data from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet), a project of the Centers for Disease Contol and Prevention.

John Day, an MDA research grantee who directs the MDA clinic at the University Medical Center-Fairview in Minneapolis, discussed the need for doctors to “recognize the multiple faces of myotonic dystrophy.”

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