Columns

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

April 10, 2019June 21, 2019

Because Saying ‘No, I Won’t’ Just Isn’t My Style

Columns, Little Victories - a Column by Matthew Lafleur

They couldn’t understand why I wouldn’t try, and my absolute refusal surprised me, too. Downtown Los Angeles in 2005 was unfamiliar to me, in a good way. It was ... Read more

April 9, 2019June 21, 2019

It Starts with Responsibility

Columns, No Good Excuse - a Column by Sean Baumstark

Recently, a topic of conversation on the podcast I co-host, “Two Disabled Dudes,” revolved around this column and the idea of excuses versus reasons. My co-host, Kyle Bryant, and ... Read more

April 8, 2019June 21, 2019

I’m Trying a Different Approach to Fitness

Columns, Fighting FA - a Column by Frankie Perazzola

Lately, I’ve been finding it difficult to go to my local gym. It’s accessible, so that’s not the problem. The issue is that I’ve stopped enjoying the experience. While ... Read more

April 5, 2019June 21, 2019

Thankful to Get Expert FA Care for My Checkup

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

I had my annual Friedreich’s ataxia checkup last week at Children’s Hospital of Philadelphia, which hosts a Friedreich’s Ataxia Center of Excellence for patients and their families. I’m very fortunate ... Read more

April 3, 2019June 3, 2019

Waiting to Meet My New Service Dog

Columns, Little Victories - a Column by Matthew Lafleur

I first encountered a service dog accompanying a person with Friedreich’s ataxia (FA) three years ago. I had met my friend and fellow FARA ambassador Andrea and she had ... Read more

April 2, 2019June 3, 2019

Why I Don’t Wait for the Right Time Anymore

Columns, No Good Excuse - a Column by Sean Baumstark

Is there ever a “right” time? I’d argue that this idea is mentally comforting, but the “right time” doesn’t exist. You can wait all you want, but that’s where ... Read more

March 29, 2019May 15, 2019

Accepting Wheelchair Use for a Comfortable Day at the Museum

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

When my sister, brother, and I were younger, our parents would take us on trips to various museums. These memorable times included day trips to the art or science ... Read more

March 28, 2019May 15, 2019

Austin Knows How to Treat People with Disabilities

Columns, My Darling Disability - a Column by Kendall Harvey

Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used ... Read more

March 27, 2019May 15, 2019

Consistency in the French Quarter with FA

Columns, Little Victories - a Column by Matthew Lafleur

My unharnessed wheelchair swerved unexpectedly. I reached out to grab onto something so that I wouldn’t flip over. Riding in the back of my former wheelchair-accessible van was challenging. ... Read more

March 22, 2019April 18, 2019

Mom’s Care and a Little Planning Made for a Fun St. Paddy’s Eve

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

This past weekend was St. Patrick’s Day. Almost every bar, restaurant, and establishment had various specials going on all weekend since the holiday fell on a Sunday. The venue ... Read more

March 20, 2019April 5, 2019

Death, My Constant Companion

Columns, Little Victories - a Column by Matthew Lafleur

Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four ... Read more

March 19, 2019March 18, 2019

Introducing ‘No Good Excuse,’ a New Friedreich’s Ataxia Column

Columns, No Good Excuse - a Column by Sean Baumstark

I’m convinced that we all think we’re unique in the following regard: Something about who we are, or our circumstances, excuses us from being better or from being the best ... Read more

March 18, 2019March 14, 2019

Why I Believe Adaptive Fitness Is Important

Columns, Fighting FA - a Column by Frankie Perazzola

This week, I wanted to do something a little different. As an FA patient diagnosed only four years ago and with no sign of a heart condition yet, I ... Read more

March 15, 2019April 5, 2019

How I Stay Active in Each Season of the Year

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

Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the first day of spring on ... Read more

March 13, 2019March 29, 2019

Decompressing from Life’s Complexities on a Lazy Sunday

Columns, Little Victories - a Column by Matthew Lafleur

  I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing ... Read more

March 11, 2019March 22, 2019

Using Both a Walker and a Wheelchair

Columns, Fighting FA - a Column by Frankie Perazzola

“Weren’t you just in a wheelchair? Why are you using a walker now? Are you getting better? If you can walk, why do you even have a wheelchair?” I ... Read more

March 8, 2019March 22, 2019

How to Plan a Grassroots FA Event

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

Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices ... Read more

March 7, 2019March 20, 2019

What Fundraising Means to Me

Columns, My Darling Disability - a Column by Kendall Harvey

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when ... Read more

March 6, 2019March 19, 2019

I’ve Learned to Face My Reality While Hoping for an FA Cure

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom ... Read more

March 1, 2019March 13, 2019

Alone We Are Rare, but Together We Are Strong

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

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the opportunity to share their experiences and raise awareness of the more than 7,000 known ... Read more

February 28, 2019March 13, 2019

Becoming Dependent Restored My Independence 

Columns, My Darling Disability - a Column by Kendall Harvey

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing ... Read more

February 27, 2019March 12, 2019

An FAer’s Reflection on Rare Disease Day

Columns, Little Victories - a Column by Matthew Lafleur

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have ... Read more

February 22, 2019March 12, 2019

Managing Fatigue in the Workplace

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

In a given week, a full-time employee can work five days and 40 hours or more. With all of these hours, it can feel as though a workplace has ... Read more

February 21, 2019February 27, 2019

Respecting My Body Despite Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world ... Read more

February 20, 2019February 27, 2019

I’m Both an FA Patient and a Cajun During Mardi Gras

Columns, Little Victories - a Column by Matthew Lafleur

I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no ... Read more

February 18, 2019February 25, 2019

To the Parents of Children with FA: I Commend You

Columns, Fighting FA - a Column by Frankie Perazzola

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from ... Read more

February 14, 2019February 22, 2019

The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial

Columns, My Darling Disability - a Column by Kendall Harvey

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” ... Read more

February 13, 2019February 22, 2019

The Anchor on My Wheelchair from My Steadfast FA Friend

Columns, Little Victories - a Column by Matthew Lafleur

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” ... Read more

February 11, 2019February 14, 2019

When in Doubt About Social Media Content, Just Be Honest

Columns, Fighting FA - a Column by Frankie Perazzola

Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? Should I discuss this topic? ... Read more