Hey Folks

The second annual BMD Convention is officially scheduled for Aug 14th, 2010 in Boston.

Those of you that attended last year remember how much fun it was and how much we learned. This years conference will be even bigger than last year and will have more to offer.

Dr. Brian Tseng is asking for ideas and feedback from all you BMDrs out there to help him and his staff work with MDA to put on a conference that you all will find helpful and compelling. Please respond to this posting with any ideas you have.

This is your big shot to get your input included, so don't be shy!

Thanks, Kevin

My family and I will be there. Hope to see you all there :-)

Oh, that's great, I'll be there too. I wasn't there last year so I don't know what topics were covered (are they on youtube now?), so I'm not sure what other things I'd like to see at the conference.

I am hoping to be able to make it this year. I would really like them to have someone come talk about the role of exercise and stretching in managing BMD - there are some doctors in rehabilitation medicine who have studied this, particularly at UC Davis. This is a big issue for many of us with BMD who are very mobile still as adults and hope to remain mobile as long as possible. I would also like them to invite Chris Rosa to talk again - I'd like to hear his perspective on BMD identity - I don't know what people who already saw him talk last year would think about that.

I definitely am going to attend this year.  Thanks to Kevin for setting this up for us.

Here are my ideas/brainstorms:

1.  A cardiac panel of docs discussing latest studies and strategies to help BMD cardiac dysfunction.  There are some docs I know at OSU and at Nationwide who do Becker/Duchenne specific research we could invite.

2. A talk by NIH representative on what grants/activity are happening at NIH.

3. A talk by an industry rep who has done a clinical study on BMD (thinking Wyeth)

4. Inviting the author if the exercise study on BMD that was published in Brain in 2008.  Denmark study.

5. Inviting a member of Congress who is an champion for MD who lives within driving distance of Boston

6. A talk on adaptive sports for BMD/disabilities.

7. A talk on psycho/social factors of coping with BMD/disabilities.

8. Inviting reps from MDA, Parent Project, FED, CureDuchenne, on how we can work together, what their orginization is doing vis a vis BMD.

OK, those are my ideas/brainstorms.  Looking forward to it. 

Thanks for the ideas so far....keep them coming!

We've been given an opportunity to mold this conference into what we want it to be.....So let your mind dream a little and ask yourself what life questions you have that maybe you've given up on answering....Or if you've found ways to cope with your condition that you'd like to share with fellow BMDrs to help improve their lives....or doctors that you love that you want to speak to other BMDrs.

Most of all I want to encourage you to strongly consider coming to the conference. Last year was an outstanding event, with over 100 BMDrs of all shapes, sizes, and ages in attendance. We had a great time comparing stories and having a good laugh. If you've ever thought you were the only one in the world with BMD.....you will find that there are many other people very much like you.

There are likely to be over 200 BMDrs at the conference this year and I hope to see all of you there.

BTW: We are also planning on streaming the conference live, so those of you that cannot attend can watch the presentations and perhaps still ask questions online.

Thanks...Kevin

Don't forget to suggest any specific doctors/researchers that you would like to nominate to present. I know there are a few doctors from Cincinnati that got some votes last year. If the organizing team has specific names ,it is easier invite them, rather than search for someone.

What about inviting Dr. Kevin Flanigan? He does work with mutation and genotype-phenotype correlation.