Center for Genetic Muscle Disorders: News & Updates

MAY 2014

The Kennedy Krieger Institute and the FSH Society will sponsor its sixth Mid-Atlantic support group meeting on Saturday, May 10, 2014 at the Institute's Outpatient Center.

The Kennedy Krieger/FSH support group meeting is a forum for FSHD patients and families to hear experts talk on topics of interest to them. If you are interested to know more about the support group meetings, please feel free to contact Melanie Branagan at 443-923-9519 or branagan@kennedykrieger.org


FEBRUARY 2014

On February 25th, members of the muscular dystrophy community held a special Congressional briefing to urge reauthorization of The Muscular Dystrophy Community Assistance, Research and Education (MD-CARE ) Act (S 315/HR/594). The briefing featured research and clinical care leaders along with patients from across the country, including Kennedy Krieger’s own Dr. Kathryn Wagner, who discussed the enormous impact of the MD-CARE Act and current needs that would be addressed by pending amendments to this landmark law.

Senator Wicker from Mississippi, a co-sponsor of the original legislation along with staff from the offices of Sen Klobuchar (Minnesota), Rep. Burgess (Texas) and Rep. Engel (New York) were in attendance. The MD-CARE Act was initially signed into law in 2001 and is the only muscular dystrophy specific legislation in the world.

Click here to read Dr. Wagner’s speech.


FEBRUARY 2014

The Kennedy Krieger Institute and the FSH Society will sponsor its fifth Mid-Atlantic support group meeting on Saturday, February 1, 2014 at the Institute's Outpatient Center. Attended by FSHD patients and their families, the meeting will also be broadcasted live via video streaming to the FSHD community across the country and the world.

The Kennedy Krieger/FSH support group meeting is a forum for FSHD patients and families to hear experts talk on topics of interest to them.  If you are interested to know more about the support group meetings, please feel free to contact Melanie Branagan at 443-923-9519, branagan@kennedykrieger.org.


NOVEMBER 2013

Mitchell L. Schwartz, MD has once 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.


JUNE 2013

The National Institutes of Health has awarded a team from Kennedy Krieger Institute and the University of Washington with $2.9 million for the first year of an anticipated three-year grant to test a drug for Duchenne muscular dystrophy (DMD). The award is part of a $12.7 million funding initiative to match nine academic research groups with a selection of pharmaceutical industry compounds to explore new treatments for patients in eight disease areas, including Alzheimer’s disease and schizophrenia. The collaborative pilot initiative, called Discovering New Therapeutic Uses for Existing Molecules, is led by the National Center for Advancing Translational Sciences (NCATS) and funded by the NIH Common Fund.

Read the full press release.


MAY 2013

The Kennedy Krieger Institute and the FSH Society sponsored its second Mid-Atlantic support group meeting on Saturday, May 11, 2013 at the KKI Out-patient Center. Attended by FSHD patients and their families, the meeting went live via video streaming to the FSHD community across the country and the world.

The KKI/FSH support group meeting is a forum for FSHD patients and families to hear experts talk on topics of interest to them. Dr. Doris Leung, Clinical Fellow of the Muscle Center provided an update on FSHD research activities in our Institute. The results of her MRI study and its future directions generated much interest from the audience. KKI genetic counselor, Julie Cohen, presented on the genetic aspects of the disease including pre-natal testing. The talks were well received and interesting questions were raised by the attendees and those watching via video streaming.

The KKI/FSH Society sponsored meetings are held quarterly. The next meeting is scheduled on July 27, 2013 and the topic will be on Young Adults with FSHD. 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


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


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)