For those with rare diseases, awareness is hope.
We have national awareness and recognition days basically every day, it seems. Some aim at serious issues and causes, while others celebrate the fun side of our culture. Sunday was National Hunting and Fishing Day. Tomorrow is National Pancake Day.
Some of these signposts make less sense. For instance, February 15 is National Singles Awareness Day. Which is important because … nobody is aware of the fact that millions of people are single, especially the day after Valentine’s?
Today is International Ataxia Awareness Day, and it’s a big one for me personally. I was diagnosed with Spinocerebellar Ataxia (SCA) a few years ago (they think it’s SCA-6 but aren’t sure) and I wrote about the challenge back in 2016.
The various forms of SCA (at last count I think they had identified nearly 50) affect around 150,000 people in the US, which in the grand scheme of things isn’t a lot. Almost nobody has heard of the disease, and when it’s time to decide how to allocate research money, well, my pragmatic side understands how priorities work.
Contrast Ataxia with one of our highest priorities, for instance. ~1,735,350 new cases of cancer will be diagnosed in the US in 2018 and more than 600,000 people will die from it. So when we see that the National Cancer Institute Budget is over $5.6 billion this year, we aren’t surprised.
By 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…
Hopefully I have now, on International Ataxia Awareness Day, made you … aware.
If you could share this post I’d be grateful, and I’m sure 150,000 others with the disease would be, as well.