Columns

I recently saw a news article about a bridal store in England that not only made a positive impact on one future bride’s life but also on others’. The White Collection Bridal Boutique displayed a mannequin in a wheelchair while wearing a wedding dress. Someone posted a photo of it on…

Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of symptoms, most of which are unique to FA and not easily understood unless you have firsthand experience or a loved one with the condition. In this column, I will address some…

Bionews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, family members, close friends, and significant others — to sign up, post, and comment on messages about…

By the time you read this column, I hope to be celebrating a win for the Los Angeles Rams over the Dallas Cowboys — my favorite football team will move one step closer to the Super Bowl. Even if they lose the game, the team has had an…

Everyone has a morning routine, a plan that sets the mood for the day. Most people become so used to the regimen that they carry out tasks on autopilot. However, when living with a rare, neuromuscular disorder such as Friedreich’s ataxia, the routine can become irregular and require additional concentration,…

Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning to this column. Be aware that the movie plot includes mass suicides. *** Across…

Let the New Year’s resolutions and “fresh start” cliches pour in to overwhelm timelines and news feeds. Ringing in the new year has always been a favorite time of mine — the energy shifts. Many people, including me, desire to change and become “better.” When thinking about resolutions, I…

An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time to be happy and to seek a fresh start to be the best version of yourself. Regarding life with Friedreich’s ataxia,…

“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit around the sun, the timing seems perfect to redefine yourself, to create a better…

Let’s talk about what to do during the “calm before the storm.” And no, I am not talking about going to the grocery store during the holidays to fight through fanatical crowds for butter, milk, and eggs. I am talking about how to take advantage of calm days to prepare…

Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a job. As my physical abilities lessen, my job prospects shrink. It would seem like…

  With more than 7,000 known rare diseases in the world, it’s impossible to have all humans acknowledge and learn about every single one. No matter how life-threatening, debilitating, or serious a disease is, the hard truth is that if it doesn’t affect a large group of…