Second Annual BMD Conference - Aug 14th, 2010

Written by Administrator | 03 March 2010

Hey Folks

We just heard from the Massachusetts General Hospital that this years BMD Conference will be held on Saturday Aug 14 at the same facility as last year (Boston). There will be more details to follow as specifics are nailed down and shared with us.

Dr. Brian Tseng and his staff did a great job working with MDA on the conference last year. They are looking to have an even bigger event and are asking for your ideas and feedback on how to change the conference for this year. Please don't be shy providing your ideas.

A few ideas have been submitted so far:

Add a segment to the presentation schedule that would include a patient panel, perhaps including some representative patients with differing challenges. This would be an opportunity for doctors that attend to interact with a larger group of patients to help them better understand how to approach treatment or research.
Have an afternoon segment organized like a 'job fair' where doctors with clinical studies seeking BMD patients could attend and 'promote' their own studies. This would give the doctors access to a large group of BMD patients and patients would be able to get information on several studies conveniently in one place at one time.

If you have ideas of your own on how to make the conference better, please provide your feedback in the Hot Topics area of the forum here at BeckerMD.org

This is your chance to help form the conference to be more beneficial to the BMD community, so please give your $.02.

Thanks, Kevin

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.