Columns

February 10, 2020February 6, 2020

Rare Disease Day Is Our Chance to Be Heard

Columns, Fighting FA - a Column by Frankie Perazzola

I can’t believe it’s February 2020! This is an important month for the rare disease community as we unite and acknowledge one another’s illnesses. Rare Disease Day falls on ... Read more

February 7, 2020February 5, 2020

Treat Others as You Want to Be Treated

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

I have a chip on my shoulder from living with a rare neuromuscular disease. I feel the need to be accepted and welcomed by today’s society, and I set ... Read more

February 5, 2020February 3, 2020

Savior? Safety Net? Stumbling Block? My Complicated Relationship with My Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease ... Read more

February 4, 2020January 31, 2020

Making Excuses or Taking Responsibility? We Must Choose

Columns, No Good Excuse - a Column by Sean Baumstark

Those who know me know that I have little, if any, tolerance for poor service. I’m sure this is deeply rooted in my years of working in the service ... Read more

February 3, 2020February 3, 2020

What Kobe Bryant Meant to Me

Columns, Fighting FA - a Column by Frankie Perazzola

The world is still in shock over the loss of NBA legend Kobe Bryant. A heaviness lingers over Los Angeles, along with an overwhelming sense of, “What do we ... Read more

January 31, 2020January 30, 2020

Massage Therapy Helped to Relieve My Stress and Pain

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

Sometimes we need to take a break, to relax and breathe. Many stresses can affect young adults, including money, work deadlines, cost of living, and family issues, among others. ... Read more

January 29, 2020January 28, 2020

Lights, Camera, FA!

Columns, Little Victories - a Column by Matthew Lafleur

My physical therapist Kevin pushed a sofa to the middle of the room. I positioned my wheelchair next to it and transferred onto the soft cushions. Sitting there, I ... Read more

January 28, 2020February 3, 2020

Don’t Let Time Get Away from You

Columns, No Good Excuse - a Column by Sean Baumstark

We are wrapping up the first month of the year. Are you glad to be moving forward, or are you wishing time would slow down? The saying “Time flies ... Read more

January 27, 2020January 23, 2020

Leg Cramps, Not Monsters, Kept Me Up at Night

Columns, Fighting FA - a Column by Frankie Perazzola

We’ve all heard about the monsters under the bed that keep us up at night. Well, the monsters weren’t to blame. I was having awful leg cramps. I would ... Read more

January 24, 2020January 22, 2020

6 Ways to Stay Active During the Winter

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

Have a case of the winter blues? Cold weather can make anyone want to hibernate under a warm blanket and never leave home. When living with Friedreich’s ataxia, nothing ... Read more

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