Own the Equinox: It’s a Marathon, Not a Sprint
August 5, 2015
Finding treatments for the most common cause of combined deafness and blindness is extremely difficult. It involves non-partisan political will, scientific advancement unimaginable just a decade ago, incredible generosity, and a massive grassroots effort by members of an often neglected and forgotten community. It seems insurmountable. But is it?
We need governments to invest more in medical research overall which requires our representatives to overcome their differences and work together. It often feels impossible. But it isn’t.
We need more of that investment to go toward Usher syndrome research. Usher syndrome has never been a priority at the National Institutes of Health. It seemed like it was impossible to change that. But it wasn’t.
That investment has to be used by scientists in unique and creative ways. We need to understand the mechanism of the disease, the genetic causes, and use the most advanced medical technology mankind has ever developed. Our goal, to help the deaf hear and the blind see, seems legendarily impossible. But is isn’t.
And we, families dealing with Usher syndrome, need to be both seen and heard. We need Usher syndrome to be a term as familiar as cancer or diabetes. We need to make sure the world knows who we are and what we can accomplish, not simply to educate those that are key to scientific investment, but also to reach everyone who suffers from Usher syndrome. We need every member of our community to know there is hope, that we are going to find treatments, that it is OK to dream.
It’s an incredible challenge. But we can accomplish all of these things. They won’t happen immediately. It’s a marathon, not a sprint, after all. But the thing about marathons is that, no matter how daunting they may seem, if you work hard enough you can finish them in record time. Really, is there a better metaphor for what we need to accomplish than that?
So as we try to Own the Equinox on September 19th to raise awareness about Usher syndrome, why not run an actual marathon? Wait, that’s too easy. Why not run an actual marathon in Fairbanks, Alaska? That’s better, but it’s still missing something. Ah, I know. Why not run what is considered one of the most difficult marathons in the world in Fairbanks, Alaska? Now THAT’S more like it. That’s the type of challenge we relish.
Great. Because you are invited to join me and a host of others at the Equinox Marathon in Fairbanks, Alaska on September 19th. As we Own the Equinox to raise awareness for Usher syndrome, help show the world that it is possible to accomplish extremely difficult things. And that the Usher syndrome community is happy to lead the way.