Saturday, March 16, 2013

Private Donors Organize to Fund and Participate in Parkinson's Research

Bradley Fikes, U-T San Diego's biotechnology reporter, wrote an eye opening article describing how people suffering from Parkinson's disease are organizing private donations for research that they themselves will by party to.  It's a potentially very powerful method of organizing and pitching research projects that have huge potential but are still too risky (for various reasons) to receive government funding.

The project itself is fairly obvious and Fikes describes it as the "low hanging fruit" of stem cell therapies: generate dopamine producing cells from a patient's own induced pluripotent stem cells and reintroduce them to the patient.  The fundraising hopes to get around one big obstacle:
Because the technology is so new, getting government grants hasn’t been possible, say scientists on the project.  So the eight patients and their supporters are raising the money to finance the research themselves, under the name of Summit4StemCell, operating under the nonprofit aegis of the Parkinson’s Association of San Diego.
In essence, they're eliminating the granting agency and acting more like a private foundation, except here the foundation is being run by and for the founders and is pitching a very unique opportunity.  They've identified a worthy line of research, they've assembled a team capable of delivering on the project, and they've lined up a cohort of willing research participants to top it all off.  Recruiting participants can be an entire standalone part of the project, and they've already done it.

Now all they need is money to grease the wheels and get moving.