Inspiration for the Sole

This week Tami and I met Brian Adams, the director of the Scleroderma Foundation and his receptionist, Joanne, who suffers from the awful disease, and suddenly my microcosm expanded beyond my petty ambitions and I became acutely aware of the reason Tami and I started this business in the first place. We wanted to do something meaningful.

"The Scleroderma Foundation" it sounds so imposing. The website is sleek. The organization is the preeminent foundation for raising money and supporting families who suffer from this disease. But pull back the curtain, and voila, Wizard of Oz foolery, behind the illusion is a single overworked man and his receptionist in a half painted office in Culver City with a couple of salvaged desks. Two mere mortals racing against time to fund research to help thousands of sufferers and their families.

Tami and I were introduced to the Scleroderma Foundation because one of Tami's friends has a daughter, Lexi, who was diagnosed with systemic scleroderma when she was fifteen. For those of you unfamiliar with scleroderma, it is a chronic condition that causes inflammation and thickening of the skin. The disease is progressive and debilitating and there is no cure. But until I walked into that ragtag office and met Joanne, who unlike Lexi is in the later stages of the disease, I hadn't made the visceral connection between the foundation raising money and what the money is needed for.

You see, I forgot.

I forgot that I am one of the lucky ones.

And I forgot what it’s like to be one of the unlucky ones.

Eight years ago, my daughter, who was five at the time, was diagnosed with neuroblastoma, an almost always fatal kidney cancer.

But I am one of the lucky ones. They were mistaken. Six days after the initial diagnosis, the death sentence was reversed. It turned out that my daughter actually had Wilm’s tumor, a kidney cancer with a 95% survival rate.

She is now thirteen, and minus one kidney, perfectly healthy.

I am one of the lucky ones. Not only was hers the "good" cancer, it was also one of the cancers that had been figured out in the last thirty years. A generation earlier and she wouldn't have survived.

I wonder if thirty years ago there was a Brian and a Joanne in a half painted office pounding the pavement for research funds so my daughter could live.

Shoe accessories. It's a small idea. Very small indeed, only a little over an inch tall and wide, but sell enough of them and perhaps a grant gets funded that unlocks a cure. The LiveStrong bracelet was the brainchild of an advertising agency who asked Nike to manufacture yellow silicone wristbands and sell them in their outlets to raise money for the Lance Armstrong Foundation. The bands sell for $5 apiece, and since 2004, 70 million have been sold. That's a lot of money going toward the fight against cancer, a lot of hope for a lot of people, a lot of daughters like my own possibly saved. All from a small idea someone had about wearing yellow.