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I think at this point we all get that ending Duchenne is going to take a collaboration of efforts. Treatments will come from different researchers, produced by different pharmaceutical companies, and supported by different foundations. Ending Duchenne will be an ensemble piece, a collection of great minds (artists even) working together on the most important project to this community. I wrote an essay entitled The Theater of Duchenne that was included in the 2012 PPMD Connect Conference User's Guide, in which I compared treating Duchenne and the clinical trial process to producing a Broadway hit. I wanted to put an often confusing process down on paper to help even me better wrap my head around the players and policies involved in treating Duchenne. It's just one of the many things we shared at arguably our most comprehensive and informative conference to date. You'll find several highlights in this month's newsletter with presentations coming soon. We heard from lots of amazing people at the Conference, and wanted to highlight two voices that stood out. Jack and Nolan Willis are 10 year old twins with Duchenne who participated in one our panel about clinical trials from the patients perspective. Their insight, experience, and humor helped shed light on what patients experience when they are in trials.

The heat is on around the country - so stay cool and if you are on summer vacation, enjoy!

 

Where we are and what we’re doing

Check out how I've been spending my summer by reading my latest recap of where we've been and what we've been doing!

  • Boston, July 10-12 Working meeting - Improving the Quality of Life Meeting with Seth Mnoonkin, author of the Panic Virus, professor MIT
  • Philadelphia, July 18-19 Roundtable - Siren's Innovative Pharm event
  • Washington, D.C., July 20 - Meeting with Dr. Frieden, Director of CDC regarding consolidation of NCBDDD

 

Pat Furlong, Founding President, CEO
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