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Have List, Will Travel

It’s summertime, and that means holidays, road trips, camping, and hotels. Also, sunburns, mosquitoes, and probably dehydration. I’m kidding about the dehydration. My mom makes sure that I drink more water than she does.  I’m mostly content to be in the house with the blessed air…

Lessons from the Porcupine Mountains

Imagine your soul as a canvas that illustrates the story of your life’s journey. Sprawled across an artistic medium, what would your scenery reveal? For some, it would be a river of peaceful waters winding into stormy rapids, set upon a base of weathered stone. For others, splashes of bright…

Two Bright Lights: Jeffrey and Papa

I’m writing this on June 29, the 13th anniversary of my father’s death.    Remembering Dad today is impossible without including Jeffrey in my thoughts. Following his death, our family was reassured by one sign in particular that he had wasted no time in reuniting with…

Preparing for the Plastic Apocalypse

I have to start preparing for the plastic apocalypse. Yes, I may just have to start hoarding plastic bendy straws and forks. And also hopefully never get caught with them. (She says to the entire internet.) Or ever run out. I get it: We want to be eco-friendly. Save the…

My Continuing Journey Toward Treatment

The U.S. Food and Drug Administration (FDA) recently announced the approval of Zolgensma (onasemnogene abeparvovec-xioi), the first-ever gene therapy to treat SMA. This amazing news has thrilled the SMA community with its possibilities! Zolgensma opens new doors for increased strength, resistance to illness, and longer lifespans. As…