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In Virginia, we are entering our second month of social distancing. We have a long way to go, but we are learning to adjust. My state has been given the directive to “stay at home” until June 10. That sounds like such a long time to be home. My…

During tough and stressful times, it’s important to remember to hold each other close. This time, though, let’s take that figuratively and not literally. A recent conversation with a Charcot-Marie-Tooth community icon, Bernadette Scarduzio, reminded me of this lesson.  It may…

Hello, I hope you are well. It’s a difficult time for many of us no matter where we live, as the COVID-19 virus has spread to most of the world by now. By the time this is published, I don’t know what the situation will look like. However,…

Are you feeling anxious about COVID-19 and its effects around the world? You are not alone. In these times of uncertainty, it’s natural to feel anxious. I, too, am a bit overwhelmed by the situation. We are in a unique time, and no one knows the best way to deal…

As an Asian American, I shared the joy and pride felt by much of the global Asian community when “Parasite,” a South Korean genre-bending thriller directed by Bong Joon Ho, won best international feature film, best picture, best…

“Would you have had children if you knew they would have Charcot-Marie-Tooth?” I have heard this question before from friends and acquaintances when I told them about Charcot-Marie-Tooth disease (CMT).  When I am asked, my answer is always the same and without hesitation: yes. I would have had my son…

Social media can be an overwhelming vortex of opinions, grievances, and feelings. That is especially true of my Twitter feed. At its best, my Twitter feed is where I can pass the time laughing at memes from friends and musings from celebrities. At its worst, it is home…

On some days, I find carrying out everyday tasks harder than on others. I don’t always want to rely on my son or someone else to help me do these things. I started thinking about the tasks that are most problematic and what I can do to make them easier.

While scrolling through my Twitter feed recently, I came across a tweet from Charis Hill, an advocate for disability rights. The tweet was a list of things that every disabled person has supposedly heard at least a few…

Do you struggle with a lack of motivation this time of year? I do, and it seems to be affecting my Charcot-Marie-Tooth (CMT) symptoms. I find that my CMT symptoms are worse in colder weather than in warmer weather. In the winter, for example, I tend to feel more fatigued…