Columns

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

October 2, 2019October 23, 2019

The Zeego Tales: Takeoffs Are Scary!

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt ... Read more

October 1, 2019October 23, 2019

When Good Intentions Aren’t Enough, We Need to Take Action

Columns, No Good Excuse - a Column by Sean Baumstark

I’m currently beating myself up a little, mentally speaking. I’m finding it hard to swallow my own “no excuses” medicine.  I’m sure you already know that preaching the “no ... Read more

September 27, 2019October 23, 2019

Federal Lawsuit Targets Philadelphia’s Inaccessible Streets and Sidewalks

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

I read an article recently in The Philadelphia Inquirer that affected me on a personal level and left an impression. It addresses the poor condition of sidewalks and curb ... Read more

September 25, 2019September 25, 2019

Honoring the Legacy of Serena Lawrence

Columns, Little Victories - a Column by Matthew Lafleur

Serena Lawrence hired me as a columnist for BioNews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to ... Read more

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