Connect Meeting Scientific Conference--Informal Poll

Hi Everyone--

 

We are in the process of planning for next year's Connect conference (already!) and I would really appreciate some feedback from some of you who attended the conference in Denver this year.  So, for the first time, we ran a full-fledged scientific conference in parallel with the Connect conference--although there were some joint sessions, the majority of the scientific conference was separate and was meant to be a forum where scientists could communicate with one another (although anyone could attend the scientific sessions).  This was an experiment this year--we've received very good feedback from the scientists about the content of the scientific sessions, but we are concerned that a lot of you parents missed the talks on advocacy and PPMD's research program and agenda because we ran those sessions in parallel. 

 

So, what did you think?  If you have any feedback or suggestions, we'd love to hear it.

 

Sharon

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Sharon - I liked the topics that were discussed in the research arena. I would have liked to heard more about what PPMD was supporting and why. Also - I would suggest that each presenter have a copy of their slides on a hand out so us parents can write notes. I know, I know - it's not green but it's tough to recall notes when the speaker is moving so fast. Thank you, Char Burke
Hi Char--thanks for the feedback! (very timely too as we are already planning next year's meeting). We are going to move the format around so that there's more time spent on PPMD's research programs next year, particularly as we are going to have a lot to report on at that meeting. The main issue with printing handouts of slides (in addition to the cost) is getting people to actually get them to us in advance. A lot of the presenters finalize their presentations on the plane out because they are typically running from one thing to the next. But we can try!

Sharon

From a researcher's point of view, I thought the previous format had some advantages.  In most cases, the researchers know what the other labs are doing.  We hear their presentations at scientific conferences often.  The MDA Scientific Conference in Las Vegas in March is a good example.  For me, the Connect Meeting presents an opportunity that I don't have very often - communicating our studies to the families and talking with them about our work.  Many of us are not MDs and have little contact with people in the DMD community.  In fact, my communication with families has increased markedly because of the PPMD conferences.

Stan Froehner

Seattle

I found the scientific track enormously helpful. I did miss some of the other presentations, but most were so well documented I was able to still gain some value from them.

So, we are thinking about trying something different this year--we want to start the scientific sessions the day before the main conference to focus on immunological issues and cardiomyopathy (sort of hard core working groups) and then have the third scientific session combined with the main conference--that last session would focus on current clinical studies and therapeutics that will enter clinical testing soon.  We'll have good summaries of both the scientific sessions and the main conference sessions available so that (hopefully) no one will fee like he or she is missing too much.  I appreciated Stan Froehner's comments about having a good forum for investigators to interact with families, but I am hoping that we will still accomplish this with the combined session on clinical trials and near-clinical strategies.  David, would this work for you? 

 

We've also thought about doing a breakfast with the investigators to co-mingle families and researchers--that way everyone would have good access in an informal setting to ask questions.  Thoughts?

 

Sharon

Sharon

For your consideration
I have posted this article from:

Dr. Judy Anderson, Head, Biological Sciences
Duff Roblin Trailer, Faculty of Science,
University of Manitoba, Winnipeg MB R3T 2N2
tel: 204-474-9730; fax: 474-7604
lab tel: 474-9198
janders@ms.umanitoba.ca

- (Am J Physiol Cell Physiol, Jan 2011) Nitric-oxide donors improve prednisone effects on muscular dystrophy in the mdx mouse diaphragm

Wataru Mizunoya, Ritika Upadhaya, Frank J. Burczynski, Guqi Wang, and Judy E Anderson

In Duchenne muscular dystrophy, palliative glucocorticoid therapy can produce myopathy or calcification. Since increased nitric oxide (NO) synthase activity in dystrophic mice promotes regeneration, the outcome of two NO-donor drugs, MyoNovin (M) or isosorbide dinitrate (I), on the effectiveness of the anti-inflammatory drug, prednisone (P, in alleviating progression of dystrophy was tested. Dystrophic mdx mice were treated (18 days) as: controls or with an NO-donor ± prednisone. Fiber permeability and DNA synthesis were labeled by Evans blue dye (EBD) and bromodeoxyuridine uptake, respectively. Prednisone decreased body-weight gain; M increased quadriceps mass and I increased heart mass. Prednisone increased fiber permeability (%EBD+ fibers) and calcification in diaphragm. Treatment with NO-donors plus prednisone (M+P, I+P) reduced the %EBD+ fibers and calcification vs. P alone. The %EBD+ fibers in M+P diaphragm did not differ from control. NO-donor treatment reduced proliferation and the population of c-met+ cells, and accelerated fiber regeneration. Concurrent with prednisone, NO-donor treatment suppressed two important detrimental effects of prednisone in mice, possibly by accelerating regeneration, re-balancing satellite cell quiescence and activation in dystrophy, and/or increasing perfusion. Results suggest NO donors could improve current therapy for DMD.

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