Columns

On Rare Disease Day, Let’s Dare to Be Rare

In the coming days, a great deal of focus will be placed on Rare Disease Day, which is Feb. 29. And for good reason. Approximately 7,000 rare diseases affect up to 30 million Americans. That’s almost one in 10 people in this country. The National Institutes…

Addressing the Funding Crisis for Social Security

For those of you who follow my column, I have some good news: Sammy Eikahldit is back. My alter ego, Sammy, first appeared in my column on true accessibility for all. He returned a couple months later when we discussed how to effect positive change. Sammy has been…

Difficulties Strengthen Interabled Relationships

The best relationships aren’t full of luxurious vacations and daily smiles and laughter. Long-lasting couples have been to hell and back together, growing closer and stronger through the storms. Ups and downs because of illness and vulnerabilities, along with the need for extra support, can test an interabled relationship. But…

Now Is the Best Time to Set 2020 Goals

As we finish the first month of 2020, I keep thinking about how time flies as I get older. There are many theories for this phenomenon. For me, it’s all in the math. When I was 10, a year was 10 percent of the time I’d lived on this…

Joining a Support Group Can Make a Difference

As a kid, I found it difficult to bond with other children with muscular dystrophy (MD). As a young teen, I often compared myself to others — including those living with MD. The invisibility of my disease often made me feel like an outcast. The rarity of my type of…

Society Is Missing the True Definition of Inclusion

My experiences writing this column over the past year have been fabulous. But it was daunting at first to put pen to paper to capture what so many people feel. My first column talked about starting something new and the excitement this brings. But the reality is that the…