Friedreich’s Ataxia News Columns

September 29, 2020September 29, 2020

Connecting With Others Helps Us Move Forward

Friedreich’s Ataxia News Columns

Many things in the news lately have me thinking about the many aspects of life in which the power to affect change is in numbers. The most obvious example currently ... Read more

September 24, 2020September 24, 2020

I Have a Strange Relationship With Adrenaline

Friedreich’s Ataxia News Columns

In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia (FA) ... Read more

September 23, 2020September 23, 2020

Is Friedreich’s Ataxia a Form of Muscular Dystrophy?

Friedreich’s Ataxia News Columns

No. Thank you for reading this week’s column. *** Just kidding! I want to unpack that question, because it is a valid one. Plus, the answer has a pretty interesting ... Read more

September 17, 2020September 17, 2020

Acting Together to Cure Friedreich’s Ataxia

Friedreich’s Ataxia News Columns

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little ... Read more

September 16, 2020September 16, 2020

Moving Past Unrequited Love

Friedreich’s Ataxia News Columns

“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to accept them and even be grateful ... Read more

September 15, 2020September 15, 2020

Using Our Voices to Aid Research and Prompt Change

Friedreich’s Ataxia News Columns

I’ve had the privilege of making a lot of friends in the rare disease community since becoming a member myself. I’ve had many conversations about the day when someone knew ... Read more

September 14, 2020September 14, 2020

Reflecting on My Life Before FA

Friedreich’s Ataxia News Columns

Oh, selfies! What a wonderful way to waste time, learn the best facial angles, and finally get a good picture of ourselves, because the ones we are tagged in usually ... Read more

September 10, 2020September 10, 2020

If These Wheels Could Talk

Friedreich’s Ataxia News Columns

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like ... Read more

September 9, 2020September 9, 2020

Growing Into Life With a Disability

Friedreich’s Ataxia News Columns

I opened the door to my closet yesterday morning to pick out my shirt for the day. Most of my shirts are solid earth tones, showcasing how boring I am. ... Read more

September 3, 2020September 3, 2020

Informing Children About Friedreich’s Ataxia

Friedreich’s Ataxia News Columns

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and ... Read more

September 2, 2020September 2, 2020

Hurricane Laura Barely Missed Me

Friedreich’s Ataxia News Columns

I don’t believe I’m a lucky person. But I’m relieved that the area where I live escaped massive devastation from Hurricane Laura, which made landfall in the southern U.S. last ... Read more

September 1, 2020September 1, 2020

Focusing on One Thing at a Time

Friedreich’s Ataxia News Columns

I recently wrote about the importance of developing habits and disciplines that will help us move toward particular goals and objectives. Although that isn’t a new or jaw-dropping concept, actually ... Read more

August 27, 2020August 27, 2020

Feeling the 7-Year Itch With Friedreich’s Ataxia

Friedreich’s Ataxia News Columns

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, ... Read more

August 26, 2020August 26, 2020

Learning to Confront the Mysterious Villains in Our Lives

Friedreich’s Ataxia News Columns

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, ... Read more

August 24, 2020August 24, 2020

Adopting a Dog While Being Disabled Is All About Adapting

Friedreich’s Ataxia News Columns

I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him from a local animal care organization. During the process of adopting ... Read more