Columns

January 22, 2020January 21, 2020

Surrounded by Heroes in Philadelphia

Columns, Little Victories - a Column by Matthew Lafleur

I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to be there. The corner office ... Read more

January 21, 2020January 17, 2020

Practice Prepares Us to Be Better

Columns, No Good Excuse - a Column by Sean Baumstark

I recently wrote a column about trying something new, and I challenged readers and myself to get out of our comfort zones. I’ve been trying many new things lately. ... Read more

January 20, 2020January 16, 2020

FA Is Taking Away My Ability to Write

Columns, Fighting FA - a Column by Frankie Perazzola

Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never realized how much I wrote ... Read more

January 17, 2020January 15, 2020

We Have Much to Consider When Growing Our Family

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

Marriage is wonderful, but it comes with challenges. When one partner has Friedreich’s ataxia (FA), the challenges may be overwhelming. Now imagine the second partner also lives with a ... Read more

January 15, 2020January 22, 2020

A Scar that Exposed My Worth

Columns, Little Victories - a Column by Matthew Lafleur

Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort ... Read more

January 14, 2020January 10, 2020

The Bare Minimum: Don’t Stop There

Columns, No Good Excuse - a Column by Sean Baumstark

I’ve been thinking about the “bare minimum” in the context of guest or customer service. Many companies would argue that their success, or a healthy amount of it, is ... Read more

January 13, 2020January 9, 2020

I Learned a Big Lesson from the Tiniest of People

Columns, Fighting FA - a Column by Frankie Perazzola

We made it! A new decade is here, and the atmosphere seems a little fresher. For now, at least. I hope everyone enjoyed their holidays and spent them however ... Read more

January 10, 2020January 10, 2020

Stand Against Negative Comments and Use Them to Build Your Strength

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

Many people aren’t aware of how sensitive people with Friedreich’s ataxia (FA) can be about using a mobility aid. I struggle with feeling like a “minority” in society by ... Read more

January 8, 2020January 6, 2020

The Sound of Forgiveness

Columns, Little Victories - a Column by Matthew Lafleur

I was grateful to be around my large extended family at our yearly Christmas party. Zeego, unleashed in the huge building where the festivities took place, sniffed beneath the ... Read more

January 7, 2020January 3, 2020

Words Matter, So Speak Carefully

Columns, No Good Excuse - a Column by Sean Baumstark

The start of a new year always seems to bring new goals and commitments. I’m sure you’ve thought about a thing or two, or have created a long list ... Read more

January 6, 2020January 2, 2020

Sticking to New Year’s Resolutions

Columns, Fighting FA - a Column by Frankie Perazzola

It’s the end of a decade and the beginning of a new year. At this time, many of us make New Year’s resolutions and set our goals for the ... Read more

January 3, 2020December 19, 2019

A New Year Creates New Opportunities

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

Happy New Year! I hope all my readers had a great holiday with their loved ones and are ready for 2020. I had three main goals for 2019 regarding ... Read more

December 20, 2019December 18, 2019

A Guide to Managing Stress During the Holiday Season

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

It’s the most wonderful time of the year! Isn’t that what everyone is singing and saying? Christmas music is playing wherever you go, houses are decorated with lights, and ... Read more

December 18, 2019December 16, 2019

2019: A Year of Little Victories

Columns, Little Victories - a Column by Matthew Lafleur

I learned a new word this year: “mFARS,” which stands for the modified Friedreich’s Ataxia Rating Scale. The mFARS measures the overall effect of Friedreich’s ataxia (FA), rating abilities ... Read more

December 17, 2019December 13, 2019

Leave Your Comfort Zone and Try Something New

Columns, No Good Excuse - a Column by Sean Baumstark

I grew up as a picky eater. I was very “basic” in what I liked: graham crackers, mac and cheese, pizza, and popcorn. I didn’t dare venture out to ... Read more

December 13, 2019December 11, 2019

Showing Gratitude for My Loved Ones

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

Since my diagnosis with Friedreich’s ataxia (FA), I have learned something about myself. I realize that when making plans, I must consider my needs, including accessibility, and I try ... Read more

December 11, 2019December 9, 2019

The Zeego Tales: Zeego Come Home!

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, the autumn air was unseasonably ... Read more

December 10, 2019December 6, 2019

How Do You Approach Friction?

Columns, No Good Excuse - a Column by Sean Baumstark

I’ve been contemplating a metaphor of sorts, inspired by festivities of my family’s holiday traditions. I’m not sure if this is a thought process I’ll cling to very deeply, ... Read more

December 9, 2019December 5, 2019

I’ve Gone Through the Five Stages of Grief as an FA Parent

Candy Shell Life - a Column by Lauryn Smith, Columns

According to authors Elisabeth Kübler-Ross and David Kessler, people go through five stages of grief after losing a loved one or experiencing a catastrophic life event. The stages are ... Read more

December 6, 2019December 4, 2019

This Year, I Am Thankful for Friedreich’s Ataxia

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

Every fall, I find myself being thankful for my family and friends and hoping that they are in good health. I am also grateful for the relationships I have ... Read more

December 5, 2019January 15, 2020

Navigating the Holidays with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of ... Read more

December 4, 2019December 2, 2019

I’m Learning Compassion for My Ataxic Self

Columns, Little Victories - a Column by Matthew Lafleur

­ It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my physical therapist. I sat up ... Read more

December 2, 2019November 26, 2019

I’m Done with Making Myself Feel Bad

Columns, Fighting FA - a Column by Frankie Perazzola

It has always been a challenge for me to remain in the present. I frequently reminisce about the past and think about what I should have done. Does your ... Read more

November 27, 2019November 22, 2019

Losing the Puzzle, Winning the Game

Columns, Little Victories - a Column by Matthew Lafleur

I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to ... Read more

November 26, 2019November 22, 2019

I’m (Mostly) Thankful for Friedreich’s Ataxia

Columns, No Good Excuse - a Column by Sean Baumstark

I recently wrote about my gratitude for the people I’ve been privileged to meet and build friendships with since my Friedreich’s ataxia (FA) diagnosis. My frame of mind when ... Read more

November 22, 2019November 20, 2019

The Time Was Right for My Own Wheelchair

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

“It is time,” I thought to myself. A number of loved ones had presented the idea of transitioning from a rollator to a wheelchair out of concerns for my ... Read more

November 20, 2019November 18, 2019

The Zeego Tales: Letting the Light In

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my ... Read more

November 19, 2019November 15, 2019

I’m Grateful for My FAmily

Columns, No Good Excuse - a Column by Sean Baumstark

I often struggle with two opposing principles of thought: I have a strong animosity toward Friedreich’s ataxia (FA), and I have a deep gratitude for life because of it. ... Read more

November 18, 2019November 14, 2019

I Went to Italy and Left My Anxiety at Home

Columns, Fighting FA - a Column by Frankie Perazzola

My anxiety kicks in when I go out. Between choosing an assistive device, worrying about the accessibility of the venue, and anticipating stares from others, it can be overwhelming. ... Read more

November 15, 2019November 13, 2019

Podcast Sponsored by Reata Pharmaceuticals Focuses on Community Engagement

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

Members of the Friedreich’s ataxia (FA) community are waking up each morning with extra grateful and hopeful hearts, thanks to the recent news of a successful clinical trial sponsored ... Read more

November 13, 2019November 13, 2019

I’m Not Finished with Life Yet

Columns, Little Victories - a Column by Matthew Lafleur

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn ... Read more

November 12, 2019November 8, 2019

I Can’t Let Fear Dictate My Next Steps

Columns, No Good Excuse - a Column by Sean Baumstark

There is a first time for everything, right? That’s a phrase I often hear and it is true. A baby’s first words, a teenager’s first driver’s license, a first ... Read more

November 8, 2019November 6, 2019

Rediscovering My Passion for Baking

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

I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not be discouraged from doing what ... Read more

November 6, 2019November 4, 2019

A Perfect Picture: FA Symposium 2019

Columns, Little Victories - a Column by Matthew Lafleur

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby.  Taking a group picture ... Read more

November 5, 2019November 1, 2019

Stubbornness Is Dangerously Close to Determination

Columns, No Good Excuse - a Column by Sean Baumstark

The difference between determination and stubbornness is becoming more and more clear. With the recent fracturing of my hip and weeks of inpatient rehabilitation, I’ve found myself teetering on ... Read more

November 4, 2019October 31, 2019

Would I Recommend Traveling to Italy with FA?

Columns, Fighting FA - a Column by Frankie Perazzola

My family and I recently took an incredible vacation to our motherland, Italy. We have talked about taking this trip since I was a kid, but never had the ... Read more

November 1, 2019October 30, 2019

Bucket List Means More When Living with FA

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

My passion for the hospitality and tourism industry has shaped my bucket list. I love to travel and explore new cities. During high school, I traveled to Europe three ... Read more

October 30, 2019October 25, 2019

My Little Victories Are Enough for Me

Columns, Little Victories - a Column by Matthew Lafleur

Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search ... Read more

October 29, 2019October 25, 2019

Keeping the Endgame in Mind During Physical Therapy

Columns, No Good Excuse - a Column by Sean Baumstark

If I didn’t know that the endgame for physical therapy is to be fully functional again, it’d be easy to come up with excuses to just stay in bed ... Read more

October 28, 2019October 24, 2019

Do You Put Off Doctors’ Appointments Due to Anxiety?

Columns, Fighting FA - a Column by Frankie Perazzola

Scheduling my own doctors’ appointments was one of the biggest indications I was getting older. I remember how I felt when I first did it about age 18. I ... Read more

October 25, 2019October 23, 2019

Stay Involved in the FA Community Even When You Can’t Attend an Event

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

In a previous column, I wrote about rideATAXIA Philadelphia and the 12th Annual Friedreich’s Ataxia Symposium, hosted by the Children’s Hospital of Philadelphia. People with Friedrich’s ataxia (FA), members ... Read more

October 23, 2019October 21, 2019

Phantoms and Flowers: Hades, Persephone, and Hope

Columns, Little Victories - a Column by Matthew Lafleur

A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as ... Read more

October 22, 2019October 18, 2019

A Fractured Hip Has Slowed Me Down but I Can Still See the Silver Lining

Columns, No Good Excuse - a Column by Sean Baumstark

The topic of this column might be my ultimate excuse for not writing. Before I explain, I want to remind readers that I am an advocate for taking care ... Read more

October 18, 2019October 17, 2019

FA Events Give Us a Sense of Community and Belonging

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

October is my favorite month. I love the feeling of new beginnings that comes with the crisp fall air. And I’m excited about two major Friedreich’s ataxia (FA) events ... Read more

October 16, 2019October 14, 2019

The View from My Standing Frame

Columns, Little Victories - a Column by Matthew Lafleur

As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on ... Read more

October 15, 2019November 13, 2019

The People We Surround Ourselves With Matter

Columns, No Good Excuse - a Column by Sean Baumstark

As I write this, I want nothing more than to go home and crawl into bed. Today has been longer and more exhausting than usual. I don’t write about ... Read more

October 11, 2019October 9, 2019

How I Realized I Was Ready to Transition to the Next Assistive Device

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

I often revisit a memory from eight years ago when my family and I were in a patient room at Johns Hopkins Hospital. I had undergone multiple tests, and ... Read more

October 9, 2019October 4, 2019

The Best Man Gets His Groove On

Columns, Little Victories - a Column by Matthew Lafleur

Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at ... Read more

October 8, 2019October 4, 2019

Focus on Results, Not on Excuses

Columns, No Good Excuse - a Column by Sean Baumstark

Once again, this weekly writing exercise is proving to be more beneficial than I ever imagined. In a sense, writing and posting my thoughts for the world to read ... Read more

October 4, 2019October 1, 2019

3 Reminders for Living with an Invisible Disease

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

Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological issues, heart conditions, fatigue, and ... Read more