November 4, 2009

This Weekend, November 7th - the CINRG Fall Meeting

Just a quick note - this weekend the Cooperative International Neuromuscular Research Group based out of Children's National Medical Center - and the clinical arm of the Research Center for Genetic Medicine - is having their third annual meeting here in DC.

Coordinators, docs, and physical therapists from all over the world will be here.

I am excited because some of my favorite people will be here, Carrie Miceli and Stan Nelson from UCLA, many of the Foundation to Eradicate Duchenne group like Joel Wood, and my dear friends, Tina and Dan Carson. Annie Kennedy from MDA will be here as well. Katie Bushby and Nick Catlin will be here from the UK and foundation leaders, Debra Miller and Pat Furlong from cureDuchenne and Parent Project plus George Vella from Charley's fund will join us. Of course Bob Leshner and Avital Cnaan from CNMC and Lakshmi from India. Although it is a CINRG meeting, Eric Hoffman, as the head of GenMed, of which CINRG is the clinical branch, will be here to lend his support.

The agenda includes the Natural History study, strength testing measures, cardiac drug trial plans, duchenne mutation data comparisons, non-hormonal steroid drug development, various aspects of exon-skipping, and updates from our friends 'across the pond'.

There is a treatment goal in sight and as it unfolds, I am more and more impressed by the duchenne community coming together from around the world, making it happen with compassion and good-will.

Enough said.