During the height of the pandemic last year, a steady influx of people often reached out to me to check on my health. It was quite admirable. Friends, family members, and even people I had lost touch with would call or text for status updates, and I truly felt more…
Columns
Have you ever noticed that people are similar to countries, and vice versa? Everyone has their own exports (products or services we produce) and imports (products or services we buy, such as food). Two or more individuals can become like allied nations when a friendship forms and they begin to…
My 3-year-old grandson, James, adores his MomMom (me!) and treats me like royalty. He gently places a pillow behind my back on the couch and insists on propping up the footrest before covering me with a blanket so I’ll be cozy. He makes sure I’m fed well and…
My life is a sitcom. Recently, I was chatting with my friend Young, a columnist for Charcot-Marie-Tooth News, about our writing processes. He was rather amazed when I told him that I rarely plan column topics. In my life, it’s never…
I spent the majority of high school — and middle school, and undergrad, for that matter — stressed about my skin. I’ve written about it several times, from my cystic acne saga to the wonders of Accutane (isotretinoin). I guess you could say I’m making up for those long years…
Peter Jackson, the New Zealand filmmaker who spearheaded “The Lord of the Rings” trilogy and the 2005 remake of “King Kong,” is known for being a bit of a maverick. Even after acquiring commercial and critical success for…
I’ll be honest. I wasn’t sure what to write about. To the point where I briefly considered skipping this week’s column. I try not to, because I’m an overachiever who likes the accomplishment that comes from marking something off my to-do list, but … I am wrung out. My head…
April has been a special month for me. It probably always will be because April is when I get to celebrate the anniversary of starting my dream job here at Bionews, the company that publishes this website. Last year, I dedicated a column to a few…
Last week marked 30 years since my diagnosis day. So many emotions resurfaced as I reflected on the past three decades and all that has happened in terms of medical breakthroughs, challenges I’ve overcome, and how my prognosis has changed since I was first diagnosed. Back…
One of the most extraordinary things about life is its ability to change the person we used to be into something completely new. We can’t always choose what befalls us in life, yet we do have a responsibility to choose whether we’re changed for the better or for…
Recent Posts
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
- Community is nonnegotiable for thriving with a rare disease
