My Nonprofit Reviews

I was three years old when my sister, Josie, was born. After a year it became clear that she wasn’t reaching milestones that most babies do. Her favorite word was, “eee” which meant anything from she wanted something to a whole story she couldn’t quite communicate.
In second grade, I gave a class presentation about Josie’s disease. My mom helped me piece together things doctors had told us so far, but it wasn’t a diagnosis, it was a guess. We wanted answers, but doctors didn’t have them.
Three years later, when Josie was eight, we finally got a diagnosis of Infantile Neuroaxonal Dystrophy (INAD). It was and still is extremely difficult to come to terms with the fact that my sister will keep losing abilities and currently there is no cure.
The NBIA Disorders Association has been an invaluable resource for my family. It has connected us with many other families who have gone through similar experiences. It has kept us up to date on all the research for these disorders. Most importantly, it has provided us with a community of hope. Yes, coming to terms with a degenerative disease is difficult, but we’re not alone and progress is happening.