Columns

February 25, 2021February 22, 2021

The Battle Between Taking Care of Myself and Letting FA Ruin My Life

Columns, My Darling Disability - a Column by Kendall Harvey

The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue. When I was diagnosed with FA in 2013, my initial research focused on the big symptoms, such ... Read more

February 24, 2021February 22, 2021

A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims

Columns, Little Victories - a Column by Matthew Lafleur

Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the world will celebrate Rare Disease ... Read more

February 19, 2021February 18, 2021

In the Darkest Moments, I Find Glimmers of Hope

Columns, Hope from Home - a Column by Katie Griffith

Hello, I am so glad you are here! Take off your shoes, prop up your feet, and take a deep breath. You are welcome just as you are. Some days ... Read more

February 18, 2021February 16, 2021

On Good Days, I Fear the Sleeping Friedreich’s Ataxia Giant

Columns, My Darling Disability - a Column by Kendall Harvey

Now and then, I will have a “quiet spell” with my Friedreich’s ataxia (FA). I will notice that I haven’t fallen in a while. I haven’t noticed any new problematic ... Read more

February 16, 2021February 12, 2021

Rare Disease Day Momentum Comes From Decades of Advocacy

Columns, No Good Excuse - a Column by Sean Baumstark

Since being diagnosed with Friedreich’s ataxia (FA) in 2007, the words “rare disease” have been commonplace in my vocabulary. Like many things, we often don’t pay attention to something until ... Read more

February 11, 2021February 9, 2021

It Takes a Village to Live With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I admit I didn’t fully grasp the meaning of the African proverb “It takes a village to raise a child” until I became a mother. I bring it up because ... Read more

February 8, 2021February 3, 2021

Let’s Reconsider How We Address Our Internalized Ableism

Columns, Fighting FA - a Column by Frankie Perazzola

Because I’m involved in the disability community on social media, I’ve learned a lot about language and other disabled people’s preferences. Common topics of discussion include both ableism and internalized ... Read more

February 4, 2021February 2, 2021

How I Respond to Pity as a Friedreich’s Ataxia Patient

Columns, My Darling Disability - a Column by Kendall Harvey

The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow ... Read more

February 3, 2021February 1, 2021

I’m Learning to Set Measurable Goals and Plan for the Future

Columns, Little Victories - a Column by Matthew Lafleur

“If you don’t know where you’re going, you might not get there,” reads the first line of a book on my kitchen table. My bosses mailed the book, “Measure What ... Read more

January 28, 2021January 25, 2021

How I Protect My Blindside From Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

My healthy, rambunctious, and handsome 6-year-old son, Brooks, started his second flag football season this month. He scored two touchdowns this weekend, and I was beyond proud of him. He ... Read more

January 27, 2021January 22, 2021

The Beauty of Being Alone, and Why It’s Not for Me Anymore

Columns, Little Victories - a Column by Matthew Lafleur

I always took pride in being alone, and I still do, to some extent. That makes letting go of being alone, even just a little bit, feel so strange.  What ... Read more

January 26, 2021January 22, 2021

Why I Choose to Adapt to the Ongoing Challenges of a Progressive Disease

Columns, No Good Excuse - a Column by Sean Baumstark

I’ve been thinking lately about my goals for 2021 and my vision for life. This is a fairly common mental exercise, given the recent start of another calendar year. However, ... Read more

January 21, 2021January 20, 2021

How I Get Through Bad Days With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a cruel, relentless, lifelong battle. It can make good days hard and bad days intolerable. When people tell me I am “inspiring” or ask how I ... Read more

January 20, 2021January 18, 2021

Crawling Toward Fitness as My Abilities Change

Columns, Little Victories - a Column by Matthew Lafleur

My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I ... Read more

January 14, 2021January 12, 2021

The FA Community Needs Your Help to Advance a Potential Treatment

Columns, My Darling Disability - a Column by Kendall Harvey

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 8, 2021

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

Columns, Little Victories - a Column by Matthew Lafleur

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 8, 2021

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

Columns, No Good Excuse - a Column by Sean Baumstark

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 5, 2021

My Loved Ones Perceive My Symptom Progression Differently

Columns, My Darling Disability - a Column by Kendall Harvey

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 4, 2021

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

Columns, Little Victories - a Column by Matthew Lafleur

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 17, 2020

Find Peace and Harmony This Holiday

Columns, Fighting FA - a Column by Frankie Perazzola

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 15, 2020

Calming the Friedreich’s Ataxia Storm

Columns, My Darling Disability - a Column by Kendall Harvey

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 11, 2020

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

Columns, Little Victories - a Column by Matthew Lafleur

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 11, 2020

Gratitude and Optimism Can Help Overcome Grief

Columns, No Good Excuse - a Column by Sean Baumstark

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 8, 2020

Acknowledging My Disability Is Empowering

Columns, My Darling Disability - a Column by Kendall Harvey

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, 2020November 25, 2020

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

Columns, My Darling Disability - a Column by Kendall Harvey

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 1, 2020

My Diagnosis Isn’t the Entirety of Who I Am

Columns, Little Victories - a Column by Matthew Lafleur

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, 2020November 25, 2020

Other People Help Us Move Forward

Columns, No Good Excuse - a Column by Sean Baumstark

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 23, 2020

Disability, Independence, and Egrets

Columns, Little Victories - a Column by Matthew Lafleur

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 20, 2020

This Thanksgiving Will Be Different

Columns, No Good Excuse - a Column by Sean Baumstark

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

November 23, 2020November 19, 2020

Practicing Gratitude This Holiday Season

Columns, Fighting FA - a Column by Frankie Perazzola

With the holidays approaching, it is a popular time to look back on the year and reflect on life. It’s safe to say that we all have had one of ... Read more

November 19, 2020November 17, 2020

Friedreich’s Ataxia Has Taught Me a Lot

Columns, My Darling Disability - a Column by Kendall Harvey

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses ... Read more

November 18, 2020November 16, 2020

Strengthening Our Wings

Columns, Little Victories - a Column by Matthew Lafleur

Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall ... Read more

November 12, 2020November 10, 2020

The Importance of Being Your Own Advocate

Columns, My Darling Disability - a Column by Kendall Harvey

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” ... Read more

November 11, 2020November 9, 2020

Fearless Hearts and a Phoenix Tattoo

Columns, Little Victories - a Column by Matthew Lafleur

A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I ... Read more

November 9, 2020November 5, 2020

A Broken Bone Won’t Lead to a Broken Spirit

Columns, Fighting FA - a Column by Frankie Perazzola

I tend to focus on self-reflection and growth in my column, “Fighting FA.” I love having the ability to look at previous columns and pinpoint exactly where my headspace was ... Read more

November 5, 2020November 3, 2020

Progressing Through Friedreich’s Ataxia With a Healthy Perspective 

Columns, My Darling Disability - a Column by Kendall Harvey

Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA ... Read more

November 4, 2020November 2, 2020

How Progress Is Measured

Columns, Little Victories - a Column by Matthew Lafleur

I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero and more ... Read more

October 29, 2020October 27, 2020

I Feel Both Pride and Envy While Parenting With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I am beyond blessed to be “Mom” to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. They are wonderful, healthy, happy, energetic, smart, and funny. I feel a mix ... Read more

October 28, 2020October 26, 2020

The Night That Jeremy Cowart Made Us Feel Seen

Columns, Little Victories - a Column by Matthew Lafleur

I have no idea what I’m doing, I thought as I turned my head from side to side in an effort to provide the photographer with a variety of angles ... Read more

October 27, 2020October 23, 2020

Make Plans, Not Excuses

Columns, No Good Excuse - a Column by Sean Baumstark

I’m grateful to be alive in this day and age. Of course, I’m grateful to be alive at all, but there is something special about the tumultuous, stressful, and unique ... Read more

October 22, 2020October 20, 2020

Knowing When to Share Information About Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m constantly ... Read more

October 21, 2020October 19, 2020

The Half-life of a Bradford Pear Tree

Columns, Little Victories - a Column by Matthew Lafleur

Many trees stand stoically on my family’s property, one of which I pass each time I ride my recumbent trike. I take notice of its bark and branches more than ... Read more

October 19, 2020October 15, 2020

A Realistic Approach to Fitness With Friedreich’s Ataxia

Columns, Fighting FA - a Column by Frankie Perazzola

Because I’m transparent about my life journey with Friedreich’s ataxia (FA), questions about my approach to fitness are inevitable. Some may think it’s ego-driven and naive to think that fitness ... Read more

October 15, 2020October 13, 2020

After Quarantine, I Am ‘the Disabled Mom’ Again

Columns, My Darling Disability - a Column by Kendall Harvey

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in Texas ... Read more

October 14, 2020October 12, 2020

A Heart Like a Rabbit

Columns, Little Victories - a Column by Matthew Lafleur

Moist, squelching sounds filled the otherwise silent room as the sonogram of my heart was being conducted. I was lying on my left side on the slim hospital bed, at ... Read more

October 13, 2020October 9, 2020

A Meaningful Life Requires Intentional Time

Columns, No Good Excuse - a Column by Sean Baumstark

If there is one thing we all wish for, it is to have more time. Whether we wish for more time to work on an essay, prepare for an interview, ... Read more

October 8, 2020October 6, 2020

Let’s ‘Walk and Roll’ With Our Mobility Devices

Columns, My Darling Disability - a Column by Kendall Harvey

As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively. When my symptoms first started, I was able to get ... Read more

October 7, 2020October 5, 2020

A Functioning Mind in a Malfunctioning Body

Columns, Little Victories - a Column by Matthew Lafleur

I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good ... Read more

October 5, 2020October 1, 2020

What I Would Tell Someone Newly Diagnosed With FA

Columns, Fighting FA - a Column by Frankie Perazzola

This September, I participated in a social media campaign to raise awareness for ataxia. Those who participated had to post a photo every day that corresponded with the prompts on ... Read more

October 1, 2020September 29, 2020

In the Battle With Friedreich’s Ataxia, We’re Both Relentless

Columns, My Darling Disability - a Column by Kendall Harvey

When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.” FA is a rare, genetic occurrence that causes our ... Read more