When I tell someone about KIF1A, most people say, "Oh, I've never heard of that before!" To which I reply, "I wouldn't expect you to! We hadn't heard of it before either."
One of the many struggles in the rare disease community is just that: being rare. Because of our lack of numbers, we tend to lack a lot of things: awareness--even in the medical community--let alone the general public, knowledge about how the disorder will affect our kids now and in the future, an abundance of experts who are capable of and interested in working on treatments or a cure (although we are making great strides in this area, starting with Dr. Chung at Columbia University Medical Center), resources and funding to advance such critical research, etc.
That's why I feel so privileged to see KIF1A gaining attention. As more people become aware of KIF1A, we have a better shot of translating our dreams for our kids into reality.
So check out this article about our #WeNeedAMouse campaign and the brilliant and compassionate people at The Jackson Laboratory, who are helping us get one step closer to curing KIF1A. And if you want to check out other KIF1A stories, including one staring Parker, visit my About KIF1A page.