Hi all, I just started this blog with walkthroughs explaining how to get into places I've gone and giving them ratings as far as accessibility, kind of like Yelp but specifically for people with Becker MD and because I'm in a power wheelchair even more specifically for non-ambulatory but still transferring BMD-ers...I've only got two locations posted so far, feel free to take a look and give me feedback either through Facebook or through the blog, and anybody who is interested in contributing some walkthroughs private message me on FB or email at email@example.com. Or you can just take a look and go about your day. Thanks : )
Do we have any BMDrs in Turkey? We are considering organizing an event in Istanbul next year for BMDCON.
Please post a comment if you are interested in meeting fellow BMDrs in Turkey and might be interested in attending a meeting next year.
We have been receiving comments from the BMD community that there is false information being promoted by Defying Muscular Dystrophy and a number of associated pseudo-science vitamin sales people.
We at BeckerMD.org believe that it has all the halmarks of a scam intended to take advantage of desperate BMD families with the intention of separating you from your hard earned money. Please spend your energy and money supporting promising mainstream research and testing ...efforts instead...there are already plenty of established MD organizations to choose from.
Their claims are unproven, are NOT supported by ANY respected MD doctors, NOT supported by ANY respected MD organizations, not supported by any MD research, and not supported by any known MD scientific basis. To top it all, it is rife with conspiracy theories that traditional medicine doesn't want to cure these diseases and that you should instead pay them money for their machinery and vitamins.
If it walks like a duck and quacks like a duck.......
If you have seen postings from these folks in your Facebook groups, we recommend you delete these postings and block the users that have posted them to avoid spreading this nonsense any further.
Hey Folks. There is a geneticist that is looking to study BMD patients with 'unusual' genetic deletions. If you know your genetic issue and have been told that you are "out of frame" or somehow unusual from a genetic point of view then message me and I can put you in contact with him.
There is a new BMD research study at Cedars Sinai Heart Institute in California. It is another study from Dr. Victor, who happens to be one of our favorite doctors researching BMD. In the past, they have accepted patients from all over the USA and Canada, but if you are overseas, it wouldn't hurt to contact them too. In some cases, travel costs have also been covered, so don't hesitate to give them a ring and learn more about their study.
"BECKER MUSCULAR DYSTROPHY MALES NEED...ED FOR RESEARCH STUDY
Cedars-Sinai Heart Institute is conducting a research study evaluating blood flow during exercise in males with Becker Muscular Dystrophy (BMD). If you or your child have BMD and would like to participate, please contact us at (310) 248-8080 for screening.
Participants must be 18 to 55 years old
There is no cost to participate
Participants will be compensated and parking will be validated"
BeckerMD.org will be putting on our own BMDCON conference next year in 2014 (but we need your help to do it). We're looking to make some improvements to the format, so we can include more people around the country and around the world. We also want to include other MD charities (beyond just the MDA) that support BMD patients.
So here are our format ideas (feel free to make comments and suggestions...we're all ears)....
1) We are inviting the world...every BMDr.
2) There will be one primary meeting location where we will have a few major expert speakers and will run the overall meeting agenda. The meeting will be live streamed on the internet.
3) We will also promote a number of simultaneous smaller satellite meeting locations where groups of BMDrs can get together and socialize as well as see a live stream of the primary location presentations. This distributed approach will help include more people and help reduce the travel burden on everyone, while still getting the benefit of socializing in person with your local BMDrs....which is a very important part of these meetings.
4) Remote meetings could ask questions remotely through a webcam or over social connections like Facebook or the live streaming website....so it will be like you're there with us at the main location.
To make this happen, we need your help with the following items:
A) We have typically been doing the BMD meetings on the second Saturday of August, so that parents can tack it onto the end of the summer school break just before they go back to school and of course we would likely have nice dry weather for us all to get around and travel.
B) Suggest possible locations where a satellite meeting could be held. These satellite locations are probably best hosted by a hospital or research center that has some sort of relationship or support for BMD patients.
C) We will need some volunteers to be the organizer(s) at each of these locations. You will help us secure a location, work with the local staff to organize the event details...room, catered lunch, video screen, internet connection, and maybe help coordinate a possible local speaker.
D) We would be looking to partner with any and all charities that support BMDrs like MDA, PPMD, etc etc. It is important to engage and include any charity that would like to help BMDrs.
Love to hear your ideas and feedback. Also, if you would like to be involved in the planning, please let me know.
The MDA has finally announced the date and location for the 2013 MDA Becker Muscular Dystrophy meeting. It is in Baltimore this year.
Brand New! BMD Follistatin trial at Columbus Children's Hospital looking for participants. Please read the attached word document for more details and contact information.
If you like our BeckerMD.org logo and would like to buy some swag, please visit our store on Zazzle.com. 20% of your purchase price goes to support the BeckerMD.org BMDCON 2013 fund. If there are products you'd like us to add, please let us know and we'll design some more.
Viewer recording of the BMD conference live stream: http://www.youtube.com/watch?v=wuxiNWwu9uQ&feature=share