While I usually exploit my dunce-y motherhood moments in public blog posts, today I’m going to talk about something that’s bigger than me. Something a lot more worthy of attention than mishaps at Chuck E Cheese.

It’s easy for writers to remain in their own little cocoons, forgetting that there’s other people out there, forgetting that our words do reach people, forgetting that we have a public platform, albeit somewhat small.

Earlier this month, I received an email from a reader, Victoria, asking for my help. She has a sixteen-month-old daughter, Gwendolyn, who has been diagnosed with Spinal Muscular Atrophy (SMA). SMA is the #1 genetic killer of infants, and 1 in 40 people unknowingly carry the gene. The life expectancy is two years old.

No known cure, but the National Institute of Health has selected SMA as the disease closest to treatment of more than 600 neurological disorders. Researchers estimate that we are only a few years from treatment and/or a cure.

In her email to me, Victoria wrote:

“Over the last eight months, I have grown accustomed to feeding tubes and medical machines filling her nursery. I have even come to terms with the knowledge that I will most likely lose my baby before she reaches the age of two…well, some days any way.”

There is landmark legislation, the SMA Treatment Acceleration Act, currently sitting in Congress that, if passed, would provide researchers the resources needed to make that last crucial step.
Victoria and her husband started an online petition www.PetitiontoCureSMA.comas a grassroots effort to gain national support for the SMA Treatment Acceleration Act. They already have over 50,000 signatures.

Go sign it. It’s free and takes literally less than 30 seconds.

I did.

Go now.