Confessions of Amateur Activists

That’s what we called the presentation — it was me, Matt Rodreick, and Rob Wudlick talking about our various roles as noobs trying to figure out how to be part of the solution. I told the folks how I happened to write the new book, which is called Don’t Call It a Miracle . . . the basic story is that I’m a writer and I thought the community was lacking a basic guide to the system we’re trying to buck. The book is about the basic science, but also about the barriers to recovery, the regulatory system, the ways science gets paid for, the role of advocates, and the life/motives of scientists themselves. I tried to make a platform from which we the community can speak with authority.

Rob and Matt were all about their recent SUCCESSFUL effort to pry $1 million a year out of the MN budget for SCI research. They spent 5 years getting that done, and the good news is that they’ve made the next goal to share what they learned along the way, by way of what they’re calling the Cure Advocacy Network (CAN).

More on how to get the book and how to reach out to Matt and Rob later on. We’re in a break right now & I’m astonished to say that Naomi Kleitman just came by to ask me to sign her copy of Don’t Call It a Miracle. She’s at the Neilsen Foundation (and before that the NIH) & was one of the people I counted on to set me straight when some bit of science was confusing.

Back soon.


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