NINDS Nonprofit Forum Day 2
Whew, what a whirlwind week. Sorry for the delay in posting. The 2nd day of the NINDS Nonprofit Forum was jammed packed! Here are the slides from just the afternoon sessions (which were completely non-profit org driven and attended) the “Fed” presentations will be forthcoming at a later date:
The long and short of it all is that building a relationship with the NIH is critical to advancing the awareness and funding for AHC research in the USA. Namely, as patient advocates, we need to help drive the course of the development of data collection tools for researchers, keep abreast through NIH of similar projects as potential for crossover partnership, and streamline grant applications to capture tactical as well as strategic grants. The NIH truly has a highly effective, peer-reviewed 2 tier process (including the very non-biased Advisory Council of which Dr. David Goldstein of Duke University is a member), that does help to ensure only the best science gets funded. That being said, the benefits of a close relationship with the NIH can ensure that we are able to craft our grant proposals with our researchers to give them the highest chance of funding, and can tip the scales in our favor in the highly competitive environment the slides above describe.
We are Cure AHC will also work to implement the “creative advocacy” advice given in those presentations. We invite you to join us in that endeavor.