On Why We Ought to Support the Girls of Rett

Day ten of the Caroline’s Cause post a day marathon to raise awareness for Rett syndrome has us tackling the big questions.

Earlier this summer, I was in Harrisburg to visit my brother Tony and we were discussing Caroline’s Cause, which is bigger than this blog, and dedicated to raising awareness about Rett syndrome and occasionally organizing charity events for Caroline’s (pictured) care.

To date, Tony and our family have organized a number of events—most recently the Golf tournament, but earlier efforts included a spaghetti dinner and some others—that have funded various projects. We recently got a customized van, and I saw the nifty access ramp added to the deck behind Tony’s house.  I know there have been other improvements to the house, particularly around the main bathroom, and still more planned.

As we discussed money, I kept hearing them talk about forwarding a check with a portion of the proceeds to one or another of the Rett syndrome charities. I thought something like this: “Pffffft. Well, there’s your problem right there. You should be saving the money for future home renovations, but instead you’re forwarding it to these other people.”

Fortunately Tony and I have been brothers long enough that he knows how I think. He said, “You know why we have to send them folks money?”

I didn’t want to seem like an arrogant ass, so I humored him: “Why?” I asked.

“Because it’s all little girls,” he said. “If Rett caused erectile dysfunction in forty or fifty-something men, you can bet the medical establishment would have licked it a long time ago.”

As you can see, the people who get Rett syndrome are among the most powerless people on the planet. A few boys do get it, but it’s almost always the little girls. That’s why we have to  forward a portion of the money we collect to the folks who do research. There is no built-in economic advantage for pharmaceutical companies to find a cure.

Hard to argue with logic like that.