International Ataxia Day: Why It’s Personal

The Ataxia Research Fund’s Executive Director, Dr. Samuel Smith, understands why big diseases like cancer get all the attention. And in this brief International Ataxia Day note, he discusses why awareness is so important.

International-Ataxia-Awareness-DayBy way of comparison, my neurologist was talking a couple years back about this huge grant they got. It was for $100,000. In 2016, the National Ataxia Foundation distributed around $1.1 million dollars for research. I don’t know how you even set up a lab and pay decent research assistants for that little.

This is why, once upon a time, I said I wished I had cancer instead. We know about cancer. We’re spending billions on it. The NFL turns pink for a whole month. And people are being saved.

I said above that when you’re talking about a rare disease, awareness is hope. Awareness leads to research dollars. Research dollars lead to a cure.

And since SCA is a hereditary disease, you’re not just hoping for yourself. You’re hoping for your children and grandchildren.

My doctors are encouraged about some of the (limited) research they’ve seen, but there won’t be a cure in my lifetime. Someday, maybe…