Why I Walk

As most of you know, my family and I will be participating in the 2012 Jacksonville Walk for Autism Speaks. Well, this week, I was contacted by the folks organizing the walk. They wanted to recognize me, I guess, because I had raised a certain amount of money. Anyway, as I was talking with the coordinator, she invited me to write a short piece for their online newsletter. The theme was “Why I Walk,” and I was to keep it to 350 words or less—quite a challenge for a wordy person like myself! But I did it, and here it is, with a few links added in:

Hi, there. My name is Leo Zanchettin, and I’ve got plenty of reasons to walk for autism. Actually, I’ve got four main reasons: our kids who are on the autism spectrum. I’ve also got two other reasons: our kids who are not on the spectrum.

That’s right. My wife (Katie) and I have six kids, and four of them are on the autism spectrum. We like to say that we put the fun in high-functioning! We have so much fun that I’ve set an ambitious goal for this year’s walk—and a wacky incentive to go along with it. I’ve promised my donors that if I can raise $1,500.00 or more, I will dye a huge, blue puzzle piece in my hair for the walk. Yes, I will “go blue” for autism research!

So why do I walk? First, because I don’t want any family to go through the heartbreak we went through when our oldest child was diagnosed at 11 years of age—or the heartbreak that he went through for so long before he was diagnosed. I walk because I want every pediatrician to become expert in early detection. I want every child on the spectrum to benefit from early intervention—the way my older ones did not but my younger ones have.

Second, I walk because I dream of a world where educators recognize and welcome students on the spectrum. Too many times have we heard teachers telling us that there’s nothing wrong with one or another of our kids—at least nothing that a little extra discipline won’t solve. I walk to help raise awareness. I want kids on the spectrum to receive every opportunity to grow to their fullest potential.

Finally, I walk because I want every family touched by ASD to have access to scientifically validated, clinically effective treatments that really will help them. We are just beginning to understand the causes of ASD. We are just beginning to figure out what works and what doesn’t. I walk because I want trusted experts to protect families against hope-stealing, wallet-draining “miracle cures.”

So that’s why I walk. My kids are my heroes, and I want to give them everything I can.

Yep, that’s what I’m walking. And that’s what you are helping to accomplish with your donations. I’m very close to my goal, too. Just $120.00 more, and I’ll go blue. So here’s your chance to push me over the edge. Go ahead and make a pledge. Come on. You know you want to!

Sobering Stats and an Appeal

It’s been a while, so I thought I’d update everyone on the fundraising for my walk for autism research next month. First, I want to thank those of you who have generously pledged to support me and my family on this walk. It’s really touching to see how many of you have decided to help us reach our goal. It can be very easy for Katie and me, as we dive into the day-to-day challenges of helping our kids navigate their special challenges, to lose sight of all the wonderful people around us. But donations like yours remind us that we’re not alone in this. So again, thank you for your help!

I also wanted to let you all know that there’s still time to pledge for our family at the walk, which takes place on September 29. We are more than halfway toward our goal, but we still have a ways to go. Even if you give just a little, you’ll be getting us that much closer to our goal—and that much closer to forcing me to dye a puzzle piece in my hair!

Of course, the blue hair is just a gimmick. It’s just a fun way to throw down the gauntlet. The real issue is funding to support research into autism spectrum disorders—and the need for this research is great.

Did you know that autism is one of the least funded of childhood disorders, even though it is the fastest-growing? As an example, muscular dystrophy research receives about $162 million a year in private funding, while autism research receives only $79 million a year. But autism touches approximately 1 in 88 people, while muscular dystrophy touches only 1 in 100,000 people.

Similarly, pediatric AIDS, which receives approximately $395 million a year in private funding, affects 1 in 300 people.

What’s more, despite its growing prevalence and the huge burden it places on society (about $137 billion a year), autism research receives only 0.6% of the NIH annual budget.

Mind you, I don’t begrudge the muscular dystrophy or pediatric AIDS people a dime of the money they need. I’d like to see them receive more. But these statistics show how far we have to go in helping researchers understand this complex, mysterious thing called autism.

So if you want to help—or if you just want to make me look a little silly—click on this link and make a pledge.

Thanks, everyone! I really do appreciate your friendship and your support.