Columns

July 17, 2019July 15, 2019

A Postcard from the Island of Misfit Toys

Columns, Little Victories - a Column by Matthew Lafleur

Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from ... Read more

July 16, 2019July 12, 2019

Choosing a Season of Rest and Rejuvenation

Columns, No Good Excuse - a Column by Sean Baumstark

Sometimes I wish that life would slow down, and some days, I convince myself that it will. That’s probably not true, though. I tend to take on projects and ... Read more

July 15, 2019July 12, 2019

Learning to Accept My Progression and Grandma’s Gift of a Wheelchair

Columns, Fighting FA - a Column by Frankie Perazzola

It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in town and hang out for ... Read more

July 12, 2019July 9, 2019

Thank You, Trader Joe’s, for the Small Act of Kindness

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

As I mentioned in my previous column, my husband, Justin, and I like to complete our weekly chore of grocery shopping early in the morning. The two main reasons ... Read more

July 10, 2019July 8, 2019

Battling Like Sisyphus

Columns, Little Victories - a Column by Matthew Lafleur

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, ... Read more

July 9, 2019July 3, 2019

Skip the Excuses and Make Your Own Pullup Bar

Columns, No Good Excuse - a Column by Sean Baumstark

In a recent column, “Accountability Can Change Everything,” I gave credit to this column for helping me raise the bar in my personal performance by improving my awareness of ... Read more

July 3, 2019June 28, 2019

The Zeego Tales: From Florida to Louisiana

Columns, Little Victories - a Column by Matthew Lafleur

Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin, ... Read more

July 2, 2019June 28, 2019

Nothing Important Happens by Accident

Columns, No Good Excuse - a Column by Sean Baumstark

I have this phrase in my head that seems to be on constant repeat. I can’t tell you exactly where it’s from or if perhaps I put these words ... Read more

June 28, 2019June 26, 2019

My Parking Placard Is an Essential Tool in My Everyday Life

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

When a person lives with a chronic illness, such as Friedreich’s ataxia (FA), they will do anything to find shortcuts and ways to make life’s daily activities easier. Taking ... Read more

June 26, 2019June 21, 2019

Breaking the System of FA

Columns, Little Victories - a Column by Matthew Lafleur

The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I ... Read more

June 25, 2019June 21, 2019

Excuses Keep Us from Being Ourselves

Columns, No Good Excuse - a Column by Sean Baumstark

Last week, I had the privilege of co-hosting a panel discussion centered around living with a rare disease. Biotech company Amicus Therapeutics invited my podcast co-host, Kyle Bryant, and me ... Read more

June 24, 2019June 21, 2019

Choosing My Words on Social Media Can Be Like Walking on Eggshells

Columns, Fighting FA - a Column by Frankie Perazzola

In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged ... Read more

June 21, 2019June 19, 2019

A Tribute to My Dad for Father’s Day

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there ... Read more

June 20, 2019June 17, 2019

Donning My Friedreich’s Ataxia Hat

Columns, My Darling Disability - a Column by Kendall Harvey

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. ... Read more

June 19, 2019June 17, 2019

Living a Nomad’s Life

Columns, Little Victories - a Column by Matthew Lafleur

My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t ... Read more

June 18, 2019June 17, 2019

Excuses Keep Us from Doing the Right Thing

Columns, No Good Excuse - a Column by Sean Baumstark

Some months ago, I went looking for a new apartment for my friend and me to rent together. Since I’m pickier than he is, we settled on a price ... Read more

June 14, 2019June 12, 2019

As a Person with a Disability, Ali Stroker’s Tony Award Win Inspired Me

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

On June 9, 2019, history was made on live broadcast television for the disability community. Ali Stroker became the first wheelchair user to win a Tony Award, receiving the ... Read more

June 12, 2019June 10, 2019

Playing Catch with Dad Despite My FA’s Progression

Columns, Little Victories - a Column by Matthew Lafleur

Those days were sticky hot. Or, at least, that’s how they are in my memory. I made my way to the backyard; the bright green of the summer grass ... Read more

June 11, 2019June 7, 2019

Reassessing Is Often Better than Surrendering

Columns, No Good Excuse - a Column by Sean Baumstark

We are just about halfway through 2019. I think this is a great time to evaluate my habits, my routines, and especially my goals. I usually start every calendar ... Read more

June 10, 2019June 6, 2019

Now That I Know Independence Is Possible, I’m Ready for a Roommate

Columns, Fighting FA - a Column by Frankie Perazzola

I’ve had the same core group of friends for almost 10 years. We’ve been through many milestones together: First cars, proms, parties, boys, and graduation are some of the ... Read more

June 7, 2019June 6, 2019

A Medication Dosage Adjustment Has Helped to Relieve My Restless Legs

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Lately, I have experienced a worsening of one of my most daunting symptoms of Friedreich’s ataxia (FA). I have numbness and pain in my arms and legs, which causes ... Read more

June 5, 2019June 3, 2019

The Zeego Tales: Graduating Puppy College and Coming Home

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Read the first installment here. *** My dad pushed me up the ramp and ... Read more

June 4, 2019May 31, 2019

Missing Targets with FA: I Don’t Allow Failure to Derail My Life

Columns, No Good Excuse - a Column by Sean Baumstark

Have you ever done something from which you thought you couldn’t turn back or move forward? Have you made a huge mistake that you believed had irrevocably messed up ... Read more

June 3, 2019May 30, 2019

We’re Learning to Adjust to Our New Normal

Candy Shell Life - a Column by Lauryn Smith, Columns

Our family has the good fortune to spend summers at a beautiful lake in central Alabama. For the past nine years, my in-laws have had a summer home and ... Read more

June 3, 2019May 30, 2019

Acute Self-reflection Helps Me Better Understand Others

Columns, Fighting FA - a Column by Frankie Perazzola

For those of you who continue reading my columns, thank you for sticking with me. To those of you who are new, welcome to “Fighting FA.” I’m glad to ... Read more

May 31, 2019May 29, 2019

Visiting a Historic Farmhouse for a Good Cause

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

I am originally from Bucks County, Pennsylvania, about 25 miles outside of Philadelphia. This beautiful area combines countryside with villages and downtown charms. It is rich in history, art, ... Read more

May 29, 2019May 24, 2019

My Cousin Served as My First Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

“Ready?” my cousin asked. “I guess,” I said halfheartedly, ashamed, and eager for this to be over. My cousin easily lifted me onto his back. I remember thinking how ... Read more

May 28, 2019May 24, 2019

As a Patient, My Contributions to Research Are Important

Columns, No Good Excuse - a Column by Sean Baumstark

I recently visited my neurologist and FA clinical team at UCLA. I am participating in a clinical trial, and UCLA is my nearest study site. Oftentimes, clinical trials are ... Read more

May 22, 2019May 20, 2019

The Zeego Tales: Earning the Trust of My Service Dog

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for help. Call me “strong-willed,” if ... Read more

May 21, 2019May 20, 2019

My Planning Approach Allows Me to Prioritize My Health Needs

Columns, No Good Excuse - a Column by Sean Baumstark

I was sitting on a plane yesterday thinking about some of my deadlines when I recognized that I was feeling overwhelmed and exhausted. While I wasn’t frustrated and my ... Read more

May 20, 2019May 17, 2019

As My Abilities Diminish with FA, My Frustration Grows

Columns, Fighting FA - a Column by Frankie Perazzola

When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I didn’t experience any pain whatsoever. ... Read more

May 17, 2019May 16, 2019

Rain Won’t Stop Us from Curing FA!

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12. Two months ago, I ... Read more

May 16, 2019May 15, 2019

Wishing Away Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview ... Read more

May 15, 2019May 13, 2019

Louisiana FA Community Helps Ease Loneliness

Columns, Little Victories - a Column by Matthew Lafleur

“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community ... Read more

May 10, 2019May 8, 2019

On Being a Bridesmaid for a Day

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a ... Read more

May 8, 2019May 6, 2019

Planning for My Unpredictable Future

Columns, Little Victories - a Column by Matthew Lafleur

“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone ... Read more

May 7, 2019May 3, 2019

I Need the Support of Others Now More Than Ever

Columns, No Good Excuse - a Column by Sean Baumstark

Others. Community. Support. Help. Cheerleaders. These are the words that have been flooding my thoughts over the last couple of weeks. If you consider my writings, the podcast that ... Read more

May 3, 2019May 1, 2019

Thanks to Planning and Support, My College Alumni Weekend Was a Success

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

This past weekend, I stepped back in time and visited my alma mater, Johnson & Wales University. I made the trip to attend the Providence Alumni Reunion Weekend with ... Read more

May 1, 2019April 29, 2019

Little Victories Really Matter with FA

Columns, Little Victories - a Column by Matthew Lafleur

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. *** Despite all ... Read more

April 30, 2019April 26, 2019

The Balancing Act of Health and Limitations

Columns, No Good Excuse - a Column by Sean Baumstark

I love productivity. I have a strong disdain for being passive, or slow to move. If something needs to be done, I like to get after it quickly. There ... Read more

April 29, 2019April 25, 2019

Welcome to a ‘Candy Shell Life’

Candy Shell Life - a Column by Lauryn Smith, Columns

“I can tell that you are really strong and that you can take it,” she said. “So I’m going to tell you like it is.” This is the first ... Read more

April 26, 2019June 28, 2019

It’s OK to Accept Help When You Need It

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Living in a major city like Philadelphia, my go-to mode of transportation is the subway or the bus. My husband, Justin, has a car he parks close to our ... Read more

April 24, 2019June 28, 2019

Despite the Storm, rideATAXIA Dallas Was Worth It

Columns, Little Victories - a Column by Matthew Lafleur

My eyes shot open in the middle of a pleasant dream. The scene was familiar: There was a pool, perhaps a beach? But the dream vanished shortly after I ... Read more

April 23, 2019June 28, 2019

Learning to Be Satisfied with Our Reasons

Columns, No Good Excuse - a Column by Sean Baumstark

I met up with my best friend for lunch last week, and he noticed I was in a bit of a funk. I could feel I was a little ... Read more

April 22, 2019June 28, 2019

It’s Time: I’ve Decided to Go Back to Work

Columns, Fighting FA - a Column by Frankie Perazzola

When I was in college, my goal was to work in professional sports in marketing or sales. Before I graduated, I worked in ticket sales for the Phoenix Suns ... Read more

April 18, 2019June 28, 2019

Navigating Curious Kids and Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, ... Read more

April 17, 2019June 28, 2019

Finding Friends, Family, and Vulnerability at rideATAXIA Dallas

Columns, Little Victories - a Column by Matthew Lafleur

On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you ... Read more

April 16, 2019June 21, 2019

Accountability Can Change Everything

Columns, No Good Excuse - a Column by Sean Baumstark

I want to give credit to this column, and the writing habit I have developed because of it, for some of the recent improvements in my personal performance. Writing ... Read more

April 15, 2019June 21, 2019

To Pursue My Love of Cooking, I’ve Made Some Adjustments with FA

Columns, Fighting FA - a Column by Frankie Perazzola

I love to cook. From an early age, I spent time in the kitchen helping or annoying my Nonna. Cooking is therapeutic, and I find enjoyment in the process. ... Read more

April 12, 2019June 21, 2019

Celebrate Your Victories, No Matter How Small

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

When living with Friedreich’s ataxia, one learns to accept “what is” and to celebrate small victories. For example, I have recently discovered that cleaning and tidying up around my one-bedroom ... Read more