Author Archives: Ralph Yaniz

A Day on the Hill: Using Our Voices to Lobby Lawmakers

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…

Looking Backward but Living Life Forward With MD

“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…

Medicare’s Role for People with Disabilities

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…

Let’s Aim to Achieve True Global Accessibility

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…

Why Self-monitoring Our Functioning Levels Is Important

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…

The Impossibility of Putting a Value on a Life

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…

Living, Learning, Thriving When We Need It Most

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.

One Year Later: Catch Me if You Can

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…

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…