FightSMA Releases Video of Clinical Trials Panel Discussion at 2016 Research Conference


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2016 Annual Research Conference

FightSMA has released a video from its Clinical Trial Panel, featuring a discussion among 10 physicians and scientists on the latest research developments in spinal muscular atrophy (SMA), that was part of its recent 2016 Annual Research Conference. The video release is the first of several planned from events at the conference, which marked the group’s 25th year.

Biogen was the presenting sponsor for the three-day conference, held in Virginia, and which brought together some 40 SMA researchers.

“FightSMA’s annual research meeting is an extraordinary opportunity for the best and brightest in the research community to come together for open, productive discussions,” said Dr. Chris Lorson, of the University of Missouri, and FightSMA’s Research Director, said in a FightSMA announcement. “The meeting is an exciting forum not just for sharing data, but also for charting the paths ahead.”

Dr. Lorson moderated the panel discussion and, according to the press release, the nine other participants were:

  • Alex MacKenzie (from the Children’s Hospital of Eastern Ontario)
  • Lawrence Charnas (from Novartis Institute of Biomedical Research)
  • Stacy Rudnicki (from Cytokinetics)
  • Douglas Sproule (from AveXis, Inc.)
  • Brian Kaspar (from Nationwide Children’s Hospital)
  • Wildon Farwell (from Biogen)
  • Frank Bennett (from Ionis Pharmaceuticals)
  • Friedrich Metzger (from F. HoffmanLa Roche, Ltd.)
  • Kathy Swoboda (from Massachusetts General Hospital)

Sponsors for the event included Avexis, Hill-Rom, PTC, and Genentech.

The video is available for viewing through the FightSMA website, and is posted below.

FightSMA is an all-volunteer, parent-led nonprofit organization dedicated to finding  treatment for spinal muscular atrophy (SMA). The group has funded high-throughput screening for SMN gene upregulation, SMA mouse model research, SMA gene therapy research and other projects. In 2013, FightSMA was pivotal to the successful passage of the National Pediatric Research Network Act.