Reality bites. That was the name of a 1994 romantic comedy movie starring Winona Ryder and Ethan Hawke. It’s about four recent graduates finding out how difficult life can be when searching for a decent job and true love after college. In pop culture, that phrase eventually came to…
Columns
May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received some devastating news: Her second cousin, Pamela Averman, had passed away from pneumonia on April 28. Because this is a Huntington’s disease column,…
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
All of my friends know about my love of wine. The first summer after I turned 21 I was in Maine, and I spent many weekends traveling down to New Hampshire to tour vineyards. I especially love uncorking a strange wine, like PB&J or Choco-Straw…
The first time I met my wife, Jill, she told me she wasn’t comfortable with “PDA.” Being a smart aleck, I asked her why she didn’t like personal digital assistants. (The old PalmPilots were known as PDAs.) She flashed the patient smile of someone who knew it would require…
Columns
Forced Family Time
My wife, Jill, and I live in Illinois, where the governor has declared a stay-at-home order for our entire state. It’s been weeks now. He also suggests canceling summer events and has decided that children will not return to school for the remainder of the academic year. We are…
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…
As I walked down the street to get my afternoon coffee one day, it appeared as if everything was normal. Unfortunately, everything was not. I crossed the same streets I normally do, walked past familiar neighborhood shops, and waved to fellow business owners. I ordered my usual coffee and said…
Columns
The Realities of Rare Diseases
Social distancing seems to be the trend these days. Several reality shows illustrate what I mean: participants practice social distancing and isolation to such an extent that everyone communicates to each other behind walls (in “Love Is Blind“) and computer screens (in “The Circle“). Now, though, this is…
This past Monday night, my boyfriend and I cooked an amazing meatball dish with garlic bread on the side. (No, I will not disclose whether I used premade meatballs and garlic bread.) We paired the dishes with a bottle of sangria we’d bought for taco night this past…
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