Friedreich’s Ataxia News Columns

January 14, 2021January 14, 2021

The FA Community Needs Your Help to Advance a Potential Treatment

Friedreich’s Ataxia News Columns

The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone (RTA ... Read more

January 13, 2021January 13, 2021

Remembering Keith Andrus, Who Left His Mark on the FA Community

COVID-19 Columns, Friedreich’s Ataxia News Columns

Sticking to a New Year’s resolution may better our lives in the short-term, but thinking about what I will be remembered for matters more to me. So, instead of committing ... Read more

January 12, 2021January 12, 2021

Finding a Silver Lining in the Wake of 2020 and the Pandemic

COVID-19 Columns, Friedreich’s Ataxia News Columns

It’s obvious that things don’t change simply because we turn the page on another calendar year. Typically, the early weeks of a new year set the stage for considering new ... Read more

January 7, 2021January 7, 2021

My Loved Ones Perceive My Symptom Progression Differently

Friedreich’s Ataxia News Columns

Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I often ... Read more

January 6, 2021January 6, 2021

COVID-19 Vaccines Bring Relief for Many, Envy for Some

COVID-19 Columns, Friedreich’s Ataxia News Columns

Despite whatever successes we saw in 2020, the year mostly will be remembered for a pandemic that affected almost everyone on the planet. Though the death, financial hardships, joblessness, and ... Read more

December 21, 2020December 21, 2020

Find Peace and Harmony This Holiday

COVID-19 Columns, Friedreich’s Ataxia News Columns

It’s hard to believe this is the last column I’ll be writing in 2020. I am looking forward to somewhat of a fresh start with the new year coming in. ... Read more

December 17, 2020December 17, 2020

Calming the Friedreich’s Ataxia Storm

COVID-19 Columns, Friedreich’s Ataxia News Columns

Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and sucked ... Read more

December 16, 2020December 16, 2020

The Tale of the ‘Death March’ and the Secret We Kept

Friedreich’s Ataxia News Columns

I couldn’t take another step. My forehead was covered in sweat underneath my dark brown bangs. I was miserable from the top of my head down to my aching legs.  ... Read more

December 15, 2020December 15, 2020

Gratitude and Optimism Can Help Overcome Grief

Friedreich’s Ataxia News Columns

I’ve often heard about the multiple stages of grief, especially when faced with the loss of my dad. I’ve wrestled with grief as I’ve come to terms with expectations for ... Read more

December 10, 2020December 10, 2020

Acknowledging My Disability Is Empowering

Friedreich’s Ataxia News Columns

I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or perform ... Read more

December 3, 2020December 3, 2020

I’m Thankful for So Much, Even With Friedreich’s Ataxia

COVID-19 Columns, Friedreich’s Ataxia News Columns

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or ... Read more

December 2, 2020December 2, 2020

My Diagnosis Isn’t the Entirety of Who I Am

Friedreich’s Ataxia News Columns

An old tree once stood beside a creek far behind my childhood home. It wasn’t on my family’s property, but because wild blackberries grew there, I was willing to trespass ... Read more

December 1, 2020December 1, 2020

Other People Help Us Move Forward

Friedreich’s Ataxia News Columns

I hear parents say it often: “I felt helpless.” Sometimes I’ll hear these words during an interview on the podcast I co-host, “Two Disabled Dudes,” while other times I’ll read ... Read more

November 25, 2020November 25, 2020

Disability, Independence, and Egrets

Friedreich’s Ataxia News Columns

I was thinking of egrets as I landed uncomfortably on the floor after my wheelchair brake betrayed me. Well, it wasn’t really a betrayal, but rather my own fault for ... Read more

November 24, 2020November 24, 2020

This Thanksgiving Will Be Different

COVID-19 Columns, Friedreich’s Ataxia News Columns

It’s almost unbelievable that we continue to be significantly impacted by the COVID-19 pandemic. In many ways, the effects of the pandemic are greater today than they were nine months ... Read more