Columns

May 14, 2020May 12, 2020

Pros and Cons of Mothering with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful ... Read more

May 13, 2020May 11, 2020

Playing the Cards We’ve Been Dealt

Columns, Little Victories - a Column by Matthew Lafleur

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree ... Read more

May 11, 2020May 8, 2020

Raise Awareness by Joining the ‘Lend Us Some Muscle’ Campaign

Columns, Fighting FA - a Column by Frankie Perazzola

May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! ... Read more

May 7, 2020May 6, 2020

It’s OK to Ask Me About FA

Columns, My Darling Disability - a Column by Kendall Harvey

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I ... Read more

May 6, 2020May 4, 2020

Parallels Between 2018’s ‘Bird Box’ and the Coronavirus Pandemic

Columns, Little Victories - a Column by Matthew Lafleur

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best ... Read more

April 30, 2020May 5, 2020

This Year’s rideATAXIA Was Postponed, but We’re Not Giving Up

Columns, My Darling Disability - a Column by Kendall Harvey

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA ... Read more

April 29, 2020April 27, 2020

Choosing Our Own Identity

Columns, Little Victories - a Column by Matthew Lafleur

On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit ... Read more

April 28, 2020April 24, 2020

Life Is Fragile, So Handle with Care

Columns, No Good Excuse - a Column by Sean Baumstark

As I write this, I just received word that a friend and co-worker passed away in his sleep last night. Unbelievable shock consumed me for several moments. My friend ... Read more

April 22, 2020April 20, 2020

The Zeego Tales: A Little Something Extra

Columns, Little Victories - a Column by Matthew Lafleur

Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we ... Read more

April 20, 2020April 30, 2020

Healthy Distractions and Keeping Busy

Columns, Fighting FA - a Column by Frankie Perazzola

During this pandemic, one of my most important goals is to keep busy and throw in any available distractions. I need to keep my mind from dwelling in negativity. ... Read more

April 16, 2020April 14, 2020

Training a New Puppy Isn’t Easy, But It’s Worth It

Columns, My Darling Disability - a Column by Kendall Harvey

I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new ... Read more

April 15, 2020April 13, 2020

Keeping a Homebound Physical Therapy Routine

Columns, Little Victories - a Column by Matthew Lafleur

I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and ... Read more

April 14, 2020April 6, 2020

Remembering What Matters During the Pandemic

Columns, No Good Excuse - a Column by Sean Baumstark

As the impact of COVID-19 continues to loom over the globe, our concerns and worries seem to increase as well. What started for many as an issue in some ... Read more

April 2, 2020March 30, 2020

Journaling Helped Me Document My FA Progression

Columns, My Darling Disability - a Column by Kendall Harvey

One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I ... Read more

April 1, 2020March 30, 2020

My Family’s Legacy Is Centered on Grandma’s Cajun Food

Columns, Little Victories - a Column by Matthew Lafleur

Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the ... Read more

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