Living, Learning, Thriving - a Column by Ralph Yaniz

Columnist’s Note: Dear reader, this will be my final column at Muscular Dystrophy News. The past 15 months have been wonderful, but I have decided to take time away from writing to work on a variety of things, including the LGMD2L Foundation. Next year will bring us many opportunities…

“Life can only be understood backwards; but it must be lived forwards,” said philosopher Søren Kierkegaard. He came up with an existential masterpiece. In a dozen words, Kierkegaard captured what we all struggle with in finding meaning in our lives. I find it much easier to look backward to…

On May 1, I became eligible for Medicare. This is one of those milestones in life. I was able to access this benefit a few years early because of my muscular dystrophy. I am now on Social Security Disability Insurance (SSDI). The way it works is that after…

On May 21, the world celebrated its ninth Global Accessibility Awareness Day, but accessibility awareness hasn’t yet risen to its deserved level of interest. The awareness day website shares a great picture of this initiative’s potential scale: there are about a billion people with visual, hearing, motor, or cognitive…

The muscular dystrophy world is ever-evolving. I began to have symptoms of muscle loss and weakness in 2006. Science had not yet discovered my form of the illness, limb-girdle muscular dystrophy subtype 2L (LGMD2L). My physician, a member of the Muscular Dystrophy Association, told me they would find…

Author’s note: The COVID-19 crisis has already lasted several months. The reality is that we don’t know how this will go. But as a community, my opinion is that we need to be ready. We need to be knowledgeable. This column will focus on some work we have done to…

None of us have lived through something like what we are going through today. Some have attempted to equate it with other historical events. But there is a uniqueness to this pandemic. As far as I’m concerned, these comparisons aren’t helpful. We live in a unique period of technological advancement.

I feel strange not writing about the pandemic crisis in this column, but we’re already bombarded with information about it, and it appears we will deal with these issues for a while. So, I will be back in two weeks to discuss how I am living through the crisis. I…

March 1 was my one-year anniversary with BioNews Services, the publisher of Muscular Dystrophy News. Defining a period in this manner allows me to see how far I’ve come in the past year. My columns have focused on a number of topics. In my column from May 2019, I…

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…