Thursday, July 19, 2012

The NEA should join Faster Cures nonprofit group

Unless you live under a rock, you’ve probably heard of the Michael J. Fox Foundation for Parkinson’s Research. Fox, the "Back to the Future" etc. megastar who developed early onset Parkinson’s disease, created the foundation to back research leading to a cure.

The Michael J. Fox Foundation is only one of many members of The Research Acceleration and Innovation Network (TRAIN). TRAIN is a child of Faster Cures, the nonprofit patient advocacy organization based in Washington, DC.

Look at the list of TRAIN member organizations. Isn’t it amazing how many diseases there are for which we need scientists and entrepreneurs to develop cures?  But I don’t see the National Eczema Association on the list. I think the NEA should join TRAIN.

Although most of the diseases represented on the member list are terminal or degenerative, and eczema is neither, those of us who suffer from it can attest that it seriously affects, and in the worst cases ruins, our quality of life.

According to the Faster Cures website,
[TRAIN] was established to create opportunities for medical research innovators to discuss and tackle the challenges that cut across diseases. It is a group of unique nonprofit foundations that fund medical research across a spectrum of diseases, from breast cancer to Parkinson's disease. In many cases TRAIN's member foundations have been created by patients and their families who are frustrated by the slow pace of change in the traditional medical research system. They represent the kind of organizations that are fast becoming the engine behind innovation in disease research--collaborative, mission-driven, strategic in their allocation of resources, and results-oriented. They are organizations that have a singular focus on, and a significant stake in, getting promising therapies from the laboratory bench to the patient's bedside as rapidly as possible.
There’s no reason that I can see that the NEA shouldn’t be part of TRAIN. It looks easy to join. What would it get us? From what I can see, TRAIN provides good models for how to set up sponsored research programs, preclinical and clinical trial templates, agreements for how to share biological samples, etc. I don’t run a patient advocacy organization, so I don’t know firsthand how useful this sort of thing could be, but I imagine that it would be a lot easier to grab a template for a clinical trial than to write one from scratch. 

I read Fox’s biographical book “Always Looking Up,” published in 2009. His optimism is infectious. Read that book. You won’t regret it!


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