A year ago, my 16-year-old daughter was diagnosed with a rare disease called Neuromyelitis Optica (NMO). NMO is what they call an "orphan disease" -- meaning, not enough people have it to justify the time, money and energy required to effect a cure. Last year, my husband Bill and I created a Foundation to give grants to doctors and researchers -- and bring those "orphans" together.
I knew it would be tough to get the world to care about an illness that so few of us have. Most people are too kind to say that in so many words, but I'd like to tell you why NMO matters. Why caring about Rare Orphan Diseases matters.
That's the question I always want to be asked first. Because it would probably be the question I'd ask. I'll answer with another question: What are the requirements of compassion? In the Not-So-Golden Age of reality shows and the 24-hour news cycle, what does it take to get our attention? A police chase? Genocide? Celebrity scandal? I think what it comes down to is the quality of the attention we choose to give; that defines our humanity, our "tribe." Look, I'm a mom. When my daughter was diagnosed with NMO, I did what any mom would do: after the tears, I went into battle mode. But unlike most moms out there, I had the resources to build an army, and create a Foundation.
If you asked, Would curing NMO help unlock the cure for other diseases, like MS? Probably. But let's take NMO and MS out of it -- and ask the question again. Why should we care? The answer simply is, "Because caring is the best part of us." Don't get me wrong, I'm on a mission. I will save my daughter. But it's become much bigger than that. Through the Guthy-Jackson Foundation, I've adopted a lot of orphans. I have a whole new family -- dads and daughters, moms and sons. That was something I could never have imagined, and it has filled my heart. So: Why should we care? Because caring fills the heart and soul, and is the very best part of who we are -- and who we can be.