Columns

I’ve had the privilege of making a lot of friends in the rare disease community since becoming a member myself. I’ve had many conversations about the day when someone knew something wasn’t right, and about the day a doctor or a test confirmed that hunch.  One…

Oh, selfies! What a wonderful way to waste time, learn the best facial angles, and finally get a good picture of ourselves, because the ones we are tagged in usually misrepresent us completely. Ha-ha. As I stood in front of the mirror the…

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could tell us the story. What celebrations, collaborations, conspiracies, or moments of genius have those walls witnessed?…

I opened the door to my closet yesterday morning to pick out my shirt for the day. Most of my shirts are solid earth tones, showcasing how boring I am. As I scanned the hanging T-shirts, my eyes lingered on one. This particular shirt always seems…

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and competent adults. As the mom of a nearly 6-year-old son and a 3-year-old daughter, I can certainly confirm that.

I don’t believe I’m a lucky person. But I’m relieved that the area where I live escaped massive devastation from Hurricane Laura, which made landfall in the southern U.S. last week.  Videos like this show the destruction Laura caused in Lake Charles, Louisiana, just…

I recently wrote about the importance of developing habits and disciplines that will help us move toward particular goals and objectives. Although that isn’t a new or jaw-dropping concept, actually taking action in that direction can be harder than we often admit.

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, life-shortening disease in any capacity. So much has happened since that day in August 2013, and my seventh…

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the suspense and spookiness lies in the mystery. The veiled monsters are…

I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him from a local animal care organization. During the process of adopting him, I was excited and looked forward to my new position as a dog mom.

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend. I met my dream guy in high school, and Kyle and…

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…