June 10, 2011
I am president of NCF (and a parent of a child with FSGS), so am biased- but I will say that the volunteers and staff of this group are among the most dedicated I have ever encountered--This is not a nice disease, and treatments and knowledge of it are wanting----This organization and its devoted group will never give up until we have a solution and treatment for FSGS and neprotic syndrome.
The Great!
I've personally experienced the results of this organization in...
In my dealings with researchers, I have found a strongly motivated group of concerned individuals for these diseases.
Ways to make it better...
If I had to make changes to this organization, I would...
increase the size of the board and recruit more volunteers
MY ROLE:
Volunteer & president.