Columns

March 25, 2020March 23, 2020

Thank You for Your COVID-19 Response — from a Rare Disease Patient

Columns, Little Victories - a Column by Matthew Lafleur

It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in ... Read more

March 24, 2020March 23, 2020

Don’t Forget About Self-care During the Pandemic

Columns, No Good Excuse - a Column by Sean Baumstark

There’s never a “good time” for the world to face a pandemic, or for a region or community to deal with such a significant threat to our health and ... Read more

March 23, 2020March 20, 2020

What We Can Take Away from the Coronavirus Pandemic (So Far)

Columns, Fighting FA - a Column by Frankie Perazzola

In times like these, I wish I had superpowers or a magic wand to make everything better. The fear and panic caused by the coronavirus pandemic are taking a ... Read more

March 19, 2020March 18, 2020

I Have a Complex Relationship with Physical Therapy

Columns, My Darling Disability - a Column by Kendall Harvey

I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner. My involvement in organized sports ... Read more

March 18, 2020March 18, 2020

My Physical Therapy Progress: Mastering the Dead Man’s Crawl

Columns, Little Victories - a Column by Matthew Lafleur

At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning ... Read more

March 16, 2020March 12, 2020

My Diagnosis Changed Many of My Friendships

Columns, Fighting FA - a Column by Frankie Perazzola

Thanks to Friedreich’s ataxia (FA), I have experienced the stress and turmoil of trying to hang on to strained friendships. After my diagnosis, friendships and romantic relationships were put ... Read more

March 11, 2020March 9, 2020

I Am Redefining Hope, Every Day

Columns, Little Victories - a Column by Matthew Lafleur

I was giddy that day, a month or two ago. So much so that I texted a friend, “Do you ever feel like everything is coming together, falling into ... Read more

March 10, 2020March 9, 2020

Not All Decisions Should Be Rooted in Money

Columns, No Good Excuse - a Column by Sean Baumstark

I feel like I’ve recently made a huge decision. To some, my choice may be a no-brainer, but others may relate to the tug of war I’ve had with ... Read more

March 6, 2020March 5, 2020

Podcast Series Promotes FA Advocacy

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

The world celebrated Rare Disease Day on Feb. 29. Rare Disease Day is a global initiative to raise awareness for over 6,000 rare diseases that affect an estimated 300 ... Read more

March 3, 2020February 28, 2020

Easier Doesn’t Always Mean Better

Columns, No Good Excuse - a Column by Sean Baumstark

The podcast I co-host, “Two Disabled Dudes,” is celebrating a major milestone this week: We recently broadcast our 100th episode! It’s been a wild three years, and neither my ... Read more

March 2, 2020February 27, 2020

Hope for a Friedreich’s Ataxia Cure Keeps Fear of the Future at Bay

Candy Shell Life - a Column by Lauryn Smith, Columns

When my children were born, I had an irrational fear that something bad would happen to me, and I wouldn’t be here to take care of them. As they ... Read more

March 2, 2020February 27, 2020

Dealing with Mental Health Issues While Living with a Chronic Illness

Columns, Fighting FA - a Column by Frankie Perazzola

Mental health is a significant yet overlooked aspect of dealing with a chronic illness. While it may be taken into consideration, it’s not often treated with sufficient seriousness. Continual ... Read more

February 28, 2020February 26, 2020

Accessible Stalls Are More Than a Convenience

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

Living with Friedreich’s ataxia (FA) has taught me to appreciate the little things. I was reminded of this when I discovered a new symptom of my FA journey: bladder ... Read more

February 26, 2020February 24, 2020

I Might Be Rare, but I Am Not Alone

Columns, Little Victories - a Column by Matthew Lafleur

My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but ... Read more

February 25, 2020February 21, 2020

Learning a Lesson in Customer Service from a Recent Airline Experience

Columns, No Good Excuse - a Column by Sean Baumstark

If you follow me on social media, you probably saw this column coming. In fact, I feel like I can’t write about anything else this week other than my ... Read more

February 21, 2020February 19, 2020

FA Community Bonds Are Strong Even When We’re Far Apart

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

I remember meeting my dear friend Mary for the first time. Mary also has Friedreich’s ataxia (FA) and is the mother of four beautiful children. Five years ago, I ... Read more

February 19, 2020February 17, 2020

The Zeego Tales: A Conflicting Gift

Columns, Little Victories - a Column by Matthew Lafleur

I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw Zeego, my service dog, as ... Read more

February 18, 2020February 14, 2020

Recovery Has Reframed My Priorities

Columns, No Good Excuse - a Column by Sean Baumstark

I’m realizing that short-term disability insurance provides value beyond the financial benefit. Of course, the continued flow of income is important when it helps sustain your overall well-being and ... Read more

February 17, 2020February 13, 2020

Periods of Isolation Allow Me to Thrive

Columns, Fighting FA - a Column by Frankie Perazzola

I have been in many social situations where I have blown it. Almost every encounter, actually. I plan to relay a certain message, and my words come out differently ... Read more

February 14, 2020February 13, 2020

Rare Disease Day 2020: How You Can Get Involved

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

Did you know that one in 20 people will live with a rare disease at some point in their lifetime? Rare Disease Day, on Feb. 29, is a global ... Read more

February 12, 2020February 10, 2020

‘I’m Going to Teach You to Walk’

Columns, Little Victories - a Column by Matthew Lafleur

The sky turned pinkish and the clouds became bright blue as the Louisiana sun reached its western-most point and began to retreat from this summer day. It was five ... Read more

February 11, 2020February 7, 2020

Hide Yourself or Reveal Yourself — the Choice Is Yours

Columns, No Good Excuse - a Column by Sean Baumstark

Change seldom happens by accident or coincidence, especially when it involves other people, such as with rules, laws, policies, job promotions, and so on. The weather and the ocean ... Read more

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