ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, January 31, 2014

A Roundtable That Omits Patients Isn't Really Round

A new report on a critical topic, "Opportunities for Improving Therapy Development in ALS: Roundtable Discussion Summary," was published this week.

http://www.alsa.org/news/archive/opportunities-for-improving.html

The lead authors were two prominent ALS scientists and  "The ALS Clinical Trials Working Group."

Digging into the paper itself, we found the membership of "The ALS Clinical Trials Working Group."

The ALS Clinical Trials Working Group
  1. Lucie Bruijn, ALS Association;
  2. Merit Cudkowicz, Massachusetts General Hospital;
  3.  Barbara Bierer, Brigham and Women’s Hospital;
  4. Jesse Cedarbaum, Bristol-Myers Squibb;
  5. Chris Coffey, University of Iowa;
  6. Ronald Farkas, Food and Drug Administration;
  7. Daniela Grasso, Massachusetts General Hospital;
  8. Petra Kauffman, National Institute of Neurological Disorders and Stroke;
  9. Marianne Kearney, Massachusetts General Hospital;
  10. Doug Kerr, Biogen Idec;
  11. Karl Kieburtz, University of Rochester Medical Center;
  12. Stephen Kolb, ALS advocate;
  13. Eric Macklin, Massachusetts General Hospital;
  14. Timothy Miller, Washington University, St.Louis;
  15. Thomas Murray, The Hastings Center;
  16. John O’Gorman, Biogen Idec;
  17. Patricia O’Rouke, Partners Healthcare;
  18. John Ravits, University of California, San Diego;
  19. Jeffrey Rothstein, Johns Hopkins University;
  20. Jeremy Shefner, SUNY Upstate Medical University;
  21. Ira Shoulson, Georgetown University

Unless I'm missing something, it appears that they forgot to include anyone who actually has ALS.

The table wasn't really round, was it?


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