Columns

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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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 ... 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, ... 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 ... 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 ... 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 ... 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 ... 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 ... Read more

September 30, 2020September 28, 2020

Alternative Treatments for Friedreich’s Ataxia: Cupping and Me

Columns, Little Victories - a Column by Matthew Lafleur

It wasn’t a comfortable feeling. With every press of my physical therapist’s tiny handheld pump, the edges of a small plastic cup seemed to pinch my skin a little ... Read more

September 29, 2020September 25, 2020

Connecting With Others Helps Us Move Forward

Columns, No Good Excuse - a Column by Sean Baumstark

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 ... Read more

September 24, 2020September 22, 2020

I Have a Strange Relationship With Adrenaline

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

September 23, 2020September 21, 2020

Is Friedreich’s Ataxia a Form of Muscular Dystrophy?

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

September 17, 2020September 14, 2020

Acting Together to Cure Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

September 16, 2020September 14, 2020

Moving Past Unrequited Love

Columns, Little Victories - a Column by Matthew Lafleur

“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 ... Read more

September 15, 2020September 11, 2020

Using Our Voices to Aid Research and Prompt Change

Columns, No Good Excuse - a Column by Sean Baumstark

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 ... Read more

September 14, 2020September 10, 2020

Reflecting on My Life Before FA

Columns, Fighting FA - a Column by Frankie Perazzola

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 ... Read more

September 10, 2020September 9, 2020

If These Wheels Could Talk

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

September 9, 2020September 3, 2020

Growing Into Life With a Disability

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

September 3, 2020September 1, 2020

Informing Children About Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

September 2, 2020August 31, 2020

Hurricane Laura Barely Missed Me

Columns, Little Victories - a Column by Matthew Lafleur

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. ... Read more

September 1, 2020August 28, 2020

Focusing on One Thing at a Time

Columns, No Good Excuse - a Column by Sean Baumstark

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, ... Read more

August 27, 2020August 24, 2020

Feeling the 7-Year Itch With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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, ... Read more

August 26, 2020August 24, 2020

Learning to Confront the Mysterious Villains in Our Lives

Columns, Little Victories - a Column by Matthew Lafleur

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” ... Read more

August 24, 2020August 20, 2020

Adopting a Dog While Being Disabled Is All About Adapting

Columns, Fighting FA - a Column by Frankie Perazzola

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 ... Read more

August 20, 2020August 18, 2020

Finding the Ideal Life Partner

Columns, My Darling Disability - a Column by Kendall Harvey

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, ... Read more

August 19, 2020August 14, 2020

When a Rare Disease Treatment Comes Out, but It’s Not for You

Columns, Little Victories - a Column by Matthew Lafleur

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular ... Read more

August 18, 2020August 14, 2020

Small Lessons Can Be Learned by Addressing Big Issues

Columns, No Good Excuse - a Column by Sean Baumstark

The year 2020 will mark stories of history for generations to come. This year continues to call attention to areas of opportunity, shortcomings, and perhaps failures across many areas ... Read more

August 14, 2020August 7, 2020

Changing Perspectives and Growing Internally After My Diagnosis

Columns, Fighting FA - a Column by Frankie Perazzola

One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a progressive illness convinced my brain ... Read more

August 13, 2020August 13, 2020

When Friedreich’s Ataxia Gives Me the Disabled Blues

Columns, My Darling Disability - a Column by Kendall Harvey

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on ... Read more

August 12, 2020August 10, 2020

What ‘Hamilton’ Taught Me About Waiting

Columns, Little Victories - a Column by Matthew Lafleur

I’m not patient. Not at all.  I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, ... Read more

August 6, 2020July 31, 2020

Is the Grass Greener Without Friedreich’s Ataxia?

Columns, My Darling Disability - a Column by Kendall Harvey

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set ... Read more

August 5, 2020August 3, 2020

First I Swim, Then I Drown, Now I Float

Columns, Little Victories - a Column by Matthew Lafleur

I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The ... Read more

July 30, 2020July 28, 2020

Maintaining Abilities With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I ... Read more

July 29, 2020July 27, 2020

Even Though My Body Is Failing, I’m Not Hopeless

Columns, Little Victories - a Column by Matthew Lafleur

“Well look at that,” the doctor remarked, obviously impressed.  The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a ... Read more

July 28, 2020July 24, 2020

Push to Get the Results You Want

Columns, No Good Excuse - a Column by Sean Baumstark

I’m confident we can all agree: We have no idea what tomorrow may hold. Whether we are talking about the stock market, our individual health, or simply the weather, ... Read more

July 23, 2020July 21, 2020

I’ve Chosen to Be Intentionally Courageous

Columns, My Darling Disability - a Column by Kendall Harvey

Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. ... Read more

July 22, 2020July 20, 2020

Why I Choose to Use a Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get ... Read more

July 20, 2020July 28, 2020

Will We Ever Accept FA?

Columns, Fighting FA - a Column by Frankie Perazzola

I was recently interviewed about my diagnostic journey. I am used to answering a lot of the questions but one stuck with me. It was a very simple ask: ... Read more