BMD2 Conference - Aug 14th, 2010

Written by Administrator | 03 March 2010

Hey Folks

We had a good time at the BMD2 conference this year. We had some great speakers and awesome participation from the audience. Next year will be even bigger and better.

Videos of most of the conference will be available online soon.

Annie Kennedy, Vice President of Advocacy, Muscular Dystrophy Association

Chris Rosa, PhD, University Assistant Dean for Student Affairs, The City University of New York

Marie Louise Sveen, MD, Department of Neurology, Neuromuscular Research Unit, The Copenhagen Muscle Research Centre

Brian Tseng, MD, PhD, Director of the Pediatric Neuromuscular Clinic at Mass General Hospital, Assistant Professor of Neurology, Harvard Medical School

Ronald Victor, MD, Director of the Cedars-Sinai Center for Hypertension, Associate Director of Clinical Research and the Burns and Allen Chair in Cardiology Research at the Cedars-Sinai Heart Institute

DuchenneConnect

Written by Administrator | 07 July 2007

The BMD conference last weekend was very informative. I wish everyone could attend. It's definitely worth a trip next year.

At the conference, we were introduced to a website that some of you may know about.. DuchenneConnect https://www.duchenneconnect.org/ it is a website for all BMD/DMD sufferers (despite the name) that offers some good information about the BMD condition, updates on studies, and other good information.

The most important part is the patient genetic registry. This registry allows BMD patients to enter information about their genetic problem into an anonomyzed database to help researchers better understand what problems people have and therefore how to target treatment studies. If you register your anonoymous information is compiled with data from around the world. There is a severe shortage of BMD patients in the registry (only 80!)...the result of this, is that BMD will not be able to be addressed well by researchers. A big plus for doing it, is that they will notify you personally/anonymously if there are any studies or treatments that could apply to your specific genetic condition....this is a HUGE deal.

I strongly encourage you to go to the website and participate. The more BMD folks we can get entered, the bigger hope we have for potential treatments that are effective for BMD....if we don't....we will continue to be overlooked and underserved.