Kathi Kinnett's Blog – May 2013 Archive (3)

Transition Discussion – Lend Your Voice

This summer, PPMD will host a pre-conference the day before the , addressing the issue of transitioning individuals living with Duchenne from pediatrics, through adolescence and into adulthood.  We realize that this is a very complex process that will require a program that should begin as early as age 12, and will extend well into adulthood.  The purpose of the pre-conference is to provide a first step that will bring together parents, patients, providers, and policy makers to begin to…


Added by Kathi Kinnett on May 10, 2013 at 11:41am — No Comments

Transforming Duchenne Care Initiative Core Team Meeting 4/11-12, 2013

Meeting Summary

Last June, just prior to the Connect Conference, PPMD hosted the first Transforming Duchenne Care meeting.  This meeting was attended by health care providers and administrators from 17 institutions, parents, and representatives from MDA, CDC, NIH, and industry.  Key themes emerged from this meeting:

  1. Currently in the US, there are significant discrepancies in care for patients with Duchenne and Becker.
  2. Parents would…

Added by Kathi Kinnett on May 3, 2013 at 10:00am — No Comments

A Tale of Two LVADs

Left ventricular assist devices (LVADs) are fairly new to the pediatric population and are very new to the Duchenne community.  So new, in fact, that, in the fall of 2012, only three patients have had LVADs implanted worldwide.  As dilated cardiomyopathy and heart failure remain the major cause of death in patients with Duchenne, this novel therapy could possibly have far reaching effects.  Below are two LVAD stories, from two different perspectives: first a young man with Duchenne (Jason)…


Added by Kathi Kinnett on May 1, 2013 at 12:30pm — No Comments

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