Thursday, May 1, 2014

A Cure Is In Sight (No, I didn't make that up)

Raising three kids in the city, without a car, I do a lot of walking. More, really, than I feel like doing. Sometimes I feel like Forest Gump, just hauling butt from one location to another, dropping off some of my kids and picking up others and running five thousands errands in between; the running part being far too literal for my taste. 

So, it takes something really special to get me to walk EXTRA. To walk in a circle. 

But that is precisely what I'll be doing this Saturday, at the Foundation Fighting Blindness' Vision Walk. Hell, I'm even going all the way to Queens. If that's not a testament to the intensity of my commitment, I don't know what is. 

Vision Walk raises money (and a lot of it, over $28 million since it's inception in 2008) to fund research to treat degenerative retinal diseases.  So, they're trying to cure blindness. It's kind of a big deal. 

I happen to care about this very much because I have one. A retinal disease, that is.  You may have gleaned this if you've read the synopsis of my memoir, Now I See You, or my recent essay in the New York Times, but in case you're not fully caught up, I'll give you a recap (and then, dude, really go read the essay in the Times, it's funny! and it's the Times!):

I have a disease called retinitis pigmentosa which has been gradually robbing me of sight since I was diagnosed at 19. In point of fact, it's been at work longer than that, but that's the age at which I was clued in to what was happening. The first thing to go was my peripheral and night time vision and now the disease has moved on to my central vision too. 

Yeah, it's not great.  In fact, it's pretty damn ruthless. I'd like nothing more than to see some genius  mad scientist invent some miracle cure than can stop the nasty disease in its' tracks, show the bully who's boss. And the amazing thing is, there are HORDES of genius mad scientists out there, trying to do just that, But they - like everyone -- need money. Which is why the FFB is having a Vision Walk. 

It's a really fun, feel-good affair. Last time we went, I brought my mother and father, sisters and husband, and of course, the kids. I let Primo name the team, which is why we were "The Blazing Furies." He even designed a logo for us, of a flaming eyeball (clearly, the kid needs to work on marketing; the flaming eyeball was a bit of a downer). The opening remarks were galvanizing and it felt fantastic to move together as a group, a big unwieldy, often haphazard (hey, we're visually impaired; grace of movement is not our strong suit)  group. It's a kind of coming together that makes you recognize your own individual strength, and the collective strength we have in numbers.  Plus, it was fun. The kids drank their body weight in free Neruro water. What's not to like about that? 

So, come and walk (and if you're there, stop by the Now I See You table for a free magnifier)  or, if you're feeling a bit lazy (and I hear you, trust me),  just donate to the FFB.  They have the best tagline: "A cure is in sight." For that alone, you should give them a 10 spot.