Center for Genetic Muscle Disorders: News & Updates

FEBRUARY 2013

The Kennedy Krieger Institute and the FSH Society sponsored its first Mid-Atlantic support group meeting on Saturday, February 16, 2013 at the KKI Out-patient Center. June Kinoshita, Executive Director of the FSH Society, attended the meeting and introduced the FSH Society’s collaboration with KKI to develop this Facioscapulohumeral Muscular Dsytrophy (FSHD) support group initiative.

There were close to 40 attendees composed of FSHD patient and their families. The meeting went live via video streaming to the FSHD community across the country and the world. There were 171 hits and 48 people in the US, England, and Germany logged in throughout the meeting.

The KKI/FSH support group meeting will be a forum for FSHD patients and families to hear experts talk on topics of interest to them. During the first meeting, Dr. Kofi Boahene, Associate Professor of Facial Plastic and Reconstructive surgery at Johns Hopkins, spoke eloquently about the surgical options for FSHD patients to reconstruct facial structures in order to restore functionality. His talk generated much interest not only from the attendees present but from those watching through video streaming.

The KKI/FSH society sponsored meetings will be held quarterly. The next scheduled meetings are May 11th, July 27th, and Sept 28th, 2013. Topics of interest include physical and occupational therapy, genetics, nutrition, travel, scapular fixation surgery, etc. If you are interested to know more about the support group meetings, please feel free to contact Genila Bibat,MD at 443-923-2697, bibat@kennedykrieger.org or Lilleen Walters at 703-835-1507, LCWalters1207@aol.com

NOVEMBER 2012: -- Mitchell L. Schwartz, MD has again been selected by Baltimore Magazine to be among the Top Doctors in the Baltimore region. Dr. Schwartz is an adult pulmonologist with Pulmonary and Critical Care Associates who sees patients in the multidisciplinary Muscle Disorders clinic. He has a long history of interest in muscular dystrophy beginning from when he was an MDA camp counselor. Dr. Schwartz was recognized by Baltimore Magazine in the categories of pulmonology and intensivists/critical care.

JULY 2012: -- Kathryn R. Wagner, MD, PhD has been asked to join the Core Committee of the TREAT-NMD Advisory Committee for Therapeutics (TACT). TACT is an expert multidisciplinary body that provides the international neuromuscular community with independent and objective guidance on advancing new therapies for neuromuscular diseases. The mission of the committee is to provide applicants with transparent and consistent guidance and advice, in an educational and directional context, on the readiness of drugs and /or therapeutic targets for trial. The TACT committee convenes once every six months to consider selected applications. Additional information on TACT and other TREAT-NMD resources is available at www.treat-nmd.eu/resources/tact

MAY 2012: -- Kathryn R. Wagner, MD, PhD has been asked to Chair the Musculoskeletal Committee of the American Society of Gene and Cell Therapy (ASGCT). ASGCT's mission is to advance knowledge, awareness, and education leading to the discovery and clinical application of genetic and cellular therapies to alleviate human disease, http://www.asgct.org. The ASGCT held its 15th Annual meeting in Philadephia May 15-19, 2012 . The 16th Annual ASGCT Meeting is scheduled for May 15-18, 2013 in Salt Lake City, Utah.

MAGAZINE ARTICLES

APRIL 21, 2011 -- "AAN Clinical Research Fellow Doris Leung, MD: On the Hunt for Imaging Biomarkers for Neuromuscular Disease", Neurology Today

MARCH 31, 2011 -- "Creating a Hospitable Environment for Muscle Regeneration", Quest (MDA's Research & Health Magazine)