Columns

September 24, 2019September 25, 2019

Laughter Helps Us Keep a Hopeful Perspective

Columns, No Good Excuse - a Column by Sean Baumstark

I recently attended the Global Genes RARE Patient Advocacy Summit in San Diego. While there, I had the honor of co-facilitating a panel discussion during one of the main ... Read more

September 23, 2019September 25, 2019

FA Makes The Teenage Years Heartbreakingly Difficult

Candy Shell Life - a Column by Lauryn Smith, Columns

Junior high school was one of the hardest times of my life. Now that my children are at a similar life stage, I recognize that they are struggling, too. ... Read more

September 20, 2019September 25, 2019

Every Dollar Counts: Hosting a ‘Dine Back Night’ for FA

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

My family and I organize an annual grassroots event called the 5K Mother’s Day Race for Christina. This May was our seventh year hosting the event to bring people ... Read more

September 18, 2019September 19, 2019

Consistency Is Key with FA — Just Ask My Crummy Friend

Columns, Little Victories - a Column by Matthew Lafleur

My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I ... Read more

September 17, 2019September 19, 2019

We Shouldn’t Let Our Circumstances Justify Our Excuses

Columns, No Good Excuse - a Column by Sean Baumstark

I’ve noticed that I often get held up or feel paralyzed by the excuse of not knowing what to do. I label it as an “excuse” because I believe ... Read more

September 13, 2019September 25, 2019

3 Strategies for Enjoying Alcoholic Beverages with FA Challenges in Mind

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

My husband, Justin, and I have an annual tradition. Every summer, we go to our second-favorite city, Baltimore. We have been making this trip to “Charm City” for four ... Read more

September 11, 2019September 18, 2019

Longing for the Sky

Columns, Little Victories - a Column by Matthew Lafleur

“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I ... Read more

September 10, 2019September 18, 2019

We Shouldn’t Let Distance Weaken Our Bonds with Loved Ones

Columns, No Good Excuse - a Column by Sean Baumstark

I recently traveled to the bona fide destination wedding of some dear friends. The groom has had a significant and recognizable impact on my life so far. It so ... Read more

September 6, 2019September 18, 2019

Accessibility Items Make the Best Birthday Gifts for Those with Disabilities

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

I celebrated my birthday Aug. 24. I wrote in my recent column about the importance of looking forward with a positive attitude despite my diagnosis of Friedreich’s ataxia (FA). ... Read more

September 4, 2019September 18, 2019

Checking Up on My Heart’s Health

Columns, Little Victories - a Column by Matthew Lafleur

“The heart really is an amazing machine,” the technician mused in the dim examination room.  I was shirtless on the sterile white bed with seven wires attached to my ... Read more

September 3, 2019September 11, 2019

There Are No Good Excuses for a Bad Attitude

Columns, No Good Excuse - a Column by Sean Baumstark

There are more than 7 billion different opinions in the world — one for each person on this planet. I’m not an authority on much, but I think many of ... Read more

August 30, 2019September 11, 2019

Navigating Social Situations with a Chronic Illness

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

My birthday was last weekend. I was so excited when my best friend, Lizz, and her bridesmaids decided to host Lizz’s bachelorette party that weekend. What better way to ... Read more

August 28, 2019September 11, 2019

Physical Therapy: A Lesson in Little Victories and FA

Columns, Little Victories - a Column by Matthew Lafleur

“I think you got this,” Dr. Landreneau told me.  I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw ... Read more

August 27, 2019September 11, 2019

My Expectations Set a Precedent for How Others Perceive Me

Columns, No Good Excuse - a Column by Sean Baumstark

When the time came to sit down and write this column, I hadn’t given thought to a specific topic. This doesn’t usually concern me, because I often jot down ... Read more

August 26, 2019September 25, 2019

An Open Letter to My Goddaughter, Lucia Grace

Columns, Fighting FA - a Column by Frankie Perazzola

To my dearest Lucia, By the time you are able to read and understand this, I am not sure what Friedreich’s ataxia (FA) will have done to my body, ... Read more

August 23, 2019September 11, 2019

Along with Celebrating My Birthday, I’m Also Planning for My Future

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

August is coming to an end. This is always my favorite time of year because my birthday rapidly approaches. To me, fall indicates a fresh start and signals new ... Read more

August 22, 2019September 11, 2019

The Pros and Cons of Using a Walker

Columns, My Darling Disability - a Column by Kendall Harvey

As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing ... Read more

August 21, 2019September 25, 2019

Finding a New Endeavor: Writing a Children’s Book About Rare Diagnoses

Columns, Little Victories - a Column by Matthew Lafleur

The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday.  Speaking of unremarkable, the package itself ... Read more

August 20, 2019September 11, 2019

Placing One Foot in Front of the Other

Columns, No Good Excuse - a Column by Sean Baumstark

I know I have to practice before it is reasonable for me to meet my expectations or achieve what I set out to accomplish. Although practice sessions can be ... Read more

August 19, 2019September 4, 2019

We Adjusted Our Daughter’s School Accommodations to Meet Her Changing Needs

Candy Shell Life - a Column by Lauryn Smith, Columns

One of the first things we did when we learned of our daughter’s Friedreich’s ataxia (FA) diagnosis was to make sure she had all the accommodations she needed in ... Read more

August 19, 2019September 11, 2019

When a Girl Rolls into a Bar, She Hopes It’s Accessible

Columns, Fighting FA - a Column by Frankie Perazzola

As a 27-year-old, I enjoy going out on the town with a couple of girlfriends. However, going out now takes a lot more effort than when I turned 21. ... Read more

August 16, 2019August 13, 2019

Fatigue Is One of the Most Difficult Symptoms I Deal With

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

Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such as hearing loss, involuntary eye ... Read more

August 14, 2019September 4, 2019

‘The Lion King’ and the Circle of Life with FA

Columns, Little Victories - a Column by Matthew Lafleur

My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the ... Read more

August 13, 2019September 11, 2019

If You Want to Get Better at Something, You Need to Put in the Practice

Columns, No Good Excuse - a Column by Sean Baumstark

In my previous column, I focused on the thought processes that prevent us from doing our best. This subject has been on my mind a lot recently. In a ... Read more

August 12, 2019September 4, 2019

It’s Time to Revisit Self-accountability to Better Focus

Columns, Fighting FA - a Column by Frankie Perazzola

I have been going back and forth about this column. But I think it’s important to show my readers and myself that I am being authentic, so here we ... Read more

August 9, 2019September 11, 2019

I Found My Happy Place with a Surf Chair by the Ocean

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

There is nothing better than the feeling of the ocean air in my hair while I bask in the hot summer sun on a beautiful beach. I’ve just described ... Read more

August 7, 2019September 4, 2019

The Zeego Tales: Naming the Hurricane

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary ... Read more

August 6, 2019September 4, 2019

Excuses Are Built on the Foundation of ‘Good Enough’

Columns, No Good Excuse - a Column by Sean Baumstark

I’m learning to be cautious of the commitments I make, big or small. I don’t like to wear myself out for reasons I can’t get excited about or when ... Read more

August 2, 2019August 28, 2019

A Plan for Parenthood: 4 Things We Considered

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

It is hard to believe that July has come and gone, and that the summer season is officially coming to an end. In addition, my birthday month, August, has ... Read more

July 31, 2019August 28, 2019

FA Allows Me to See Underwater and Face Its Uncomfortable Elements

Columns, Little Victories - a Column by Matthew Lafleur

“I’d give all of my degrees to write as powerfully as Melville,” Dr. Cicardo mused. She had read a passage from “Moby-Dick; or, The Whale“ aloud to her small ... Read more

July 30, 2019August 28, 2019

Fears Should Drive Us, Not Derail Us

Columns, No Good Excuse - a Column by Sean Baumstark

I appreciate the consistent mindset this column helps me employ. With every new day, new challenge, or new opportunity, I quickly find myself coming up with new excuses as ... Read more

July 29, 2019October 2, 2019

Birthdays Stir Mixed Emotions

Columns, Fighting FA - a Column by Frankie Perazzola

My 27th birthday is this week and I don’t know how to feel about it. I am definitely not one of those people who dislikes getting older — yet. Until ... Read more

July 26, 2019August 28, 2019

4 Solutions to Beat the Heat with FA Symptoms in Mind

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

Summertime is all about enjoying the outdoors with warm weather on your skin. The season is full of barbecues, family picnics, festivals, and more, with the people you enjoy ... Read more

July 24, 2019September 4, 2019

Living By the Book: I Can Pursue the Joy of Reading in a Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

My unease kept growing on the first day of this evening class during my third semester of college. The professor hadn’t shown up yet, so we were a small ... Read more

July 23, 2019August 27, 2019

Small Steps Help Curtail Excuses

Columns, No Good Excuse - a Column by Sean Baumstark

I am finding that change is so much easier when I tackle the changes I want to make with small, short-term goals in mind. I’ve heard that advice in ... Read more

July 19, 2019August 26, 2019

4 Physical Therapy Strategies That Help Me

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

Since receiving my diagnosis of Friedreich’s ataxia (FA) back in 2011, I have attended two series of physical therapy sessions. I was an outpatient at the local University of ... Read more

July 17, 2019August 26, 2019

A Postcard from the Island of Misfit Toys

Columns, Little Victories - a Column by Matthew Lafleur

Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from ... Read more

July 16, 2019August 26, 2019

Choosing a Season of Rest and Rejuvenation

Columns, No Good Excuse - a Column by Sean Baumstark

Sometimes I wish that life would slow down, and some days, I convince myself that it will. That’s probably not true, though. I tend to take on projects and ... Read more

July 15, 2019August 12, 2019

Learning to Accept My Progression and Grandma’s Gift of a Wheelchair

Columns, Fighting FA - a Column by Frankie Perazzola

It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in town and hang out for ... Read more

July 12, 2019August 12, 2019

Thank You, Trader Joe’s, for the Small Act of Kindness

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

As I mentioned in my previous column, my husband, Justin, and I like to complete our weekly chore of grocery shopping early in the morning. The two main reasons ... Read more

July 10, 2019August 22, 2019

Battling Like Sisyphus

Columns, Little Victories - a Column by Matthew Lafleur

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, ... Read more

July 9, 2019August 9, 2019

Skip the Excuses and Make Your Own Pullup Bar

Columns, No Good Excuse - a Column by Sean Baumstark

In a recent column, “Accountability Can Change Everything,” I gave credit to this column for helping me raise the bar in my personal performance by improving my awareness of ... Read more

July 3, 2019August 8, 2019

The Zeego Tales: From Florida to Louisiana

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Zeego mumbles in his sleep. As I type this, he is on the floor ... Read more

July 2, 2019October 2, 2019

Nothing Important Happens by Accident

Columns, No Good Excuse - a Column by Sean Baumstark

I have this phrase in my head that seems to be on constant repeat. I can’t tell you exactly where it’s from or if perhaps I put these words ... Read more

June 28, 2019August 8, 2019

My Parking Placard Is an Essential Tool in My Everyday Life

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

When a person lives with a chronic illness, such as Friedreich’s ataxia (FA), they will do anything to find shortcuts and ways to make life’s daily activities easier. Taking ... Read more

June 26, 2019August 5, 2019

Breaking the System of FA

Columns, Little Victories - a Column by Matthew Lafleur

The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I ... Read more

June 25, 2019August 7, 2019

Excuses Keep Us from Being Ourselves

Columns, No Good Excuse - a Column by Sean Baumstark

Last week, I had the privilege of co-hosting a panel discussion centered around living with a rare disease. Biotech company Amicus Therapeutics invited my podcast co-host, Kyle Bryant, and me ... Read more

June 24, 2019August 7, 2019

Choosing My Words on Social Media Can Be Like Walking on Eggshells

Columns, Fighting FA - a Column by Frankie Perazzola

In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged ... Read more

June 21, 2019August 7, 2019

A Tribute to My Dad for Father’s Day

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

Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there ... Read more

June 20, 2019August 7, 2019

Donning My Friedreich’s Ataxia Hat

Columns, My Darling Disability - a Column by Kendall Harvey

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. ... Read more