Columns

January 4, 2019January 3, 2019

New Year, New Beginnings

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

An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time ... Read more

January 2, 2019January 23, 2019

A New Year’s Resolution I Can Keep

Columns, Little Victories - a Column by Matthew Lafleur

“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit ... Read more

December 21, 2018February 20, 2019

The Calm Before the Storm

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

Let’s talk about what to do during the “calm before the storm.” And no, I am not talking about going to the grocery store during the holidays to fight ... Read more

December 19, 2018December 17, 2018

A Little Gift from ‘Little Victories’

Columns, Little Victories - a Column by Matthew Lafleur

Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a ... Read more

December 17, 2018February 20, 2019

What the Gratitude Relay Means to the FA Community

Columns, Fighting FA - a Column by Frankie Perazzola

  With more than 7,000 known rare diseases in the world, it’s impossible to have all humans acknowledge and learn about every single one. No matter how life-threatening, debilitating, ... Read more

December 14, 2018February 5, 2019

How I Decreased Fatigue, Part 2: Oiling Away the Pain

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

Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. Second in a two-part series. In last week’s column, I ... Read more

December 12, 2018February 20, 2019

Surviving the In-between Moments

Columns, Little Victories - a Column by Matthew Lafleur

On any typical day at my middle school, the closer you were to the bench, the higher your social status. It was a cheaply made concrete bench, painted over ... Read more

December 7, 2018February 6, 2019

How I Decreased Fatigue, Part 1: A Bed Fit for a Queen

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

Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. First in a series. Recently, I implemented two major life ... Read more

December 6, 2018January 23, 2019

How Friedreich’s Ataxia Redefined My Faith

Columns, My Darling Disability - a Column by Kendall Harvey

I grew up in a church-going family that was always involved in ministry. We spent at least three days a week at church. I had a sound knowledge of ... Read more

December 5, 2018January 23, 2019

Introversion as an Excuse

Columns, Little Victories - a Column by Matthew Lafleur

Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose myself to unfamiliar situations. I find safety and comfort in familiarity. “So what ... Read more

December 3, 2018January 25, 2019

I Apologize for Going Dark

Columns, Fighting FA - a Column by Frankie Perazzola

Do you ever experience times when being social in any form is out of the question? When engaging in online or in-person conversation is draining, or when the thought ... Read more

November 30, 2018March 5, 2019

General Admission Tickets Can Be a Gamble for People with FA

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

Thanks to Friedreich’s ataxia, I’m never more anxious than in an open crowd in a big space. While feeling hopeless and lost in space, a lot of mixed emotions ... Read more

November 29, 2018February 28, 2019

A Physical Therapist Shares Her Perspective on Working with FA Patients

Columns, My Darling Disability - a Column by Kendall Harvey

I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I ... Read more

November 28, 2018November 26, 2018

Finding Reasons to Stay Alive

Columns, Little Victories - a Column by Matthew Lafleur

Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend ... Read more

November 21, 2018November 22, 2018

I’m Burning but Not Burnt

Columns, Little Victories - a Column by Matthew Lafleur

There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends ... Read more

November 19, 2018November 16, 2018

Answering the Questions Friends Ask Most Often About My Friedreich’s Ataxia

Columns, Fighting FA - a Column by Frankie Perazzola

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life. I was asked similar questions in each conversation, so I figured those ... Read more

November 16, 2018March 7, 2019

4 Tips for Preparing to Attend a Football Game

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

Navigating huge crowds at major events can cause great anxiety. For example, going to an arena concert or an NFL football game can include encounters with crazy fans, rude ... Read more

November 15, 2018November 14, 2018

My Journey to a Friedreich’s Ataxia Diagnosis, Part 3

Columns, My Darling Disability - a Column by Kendall Harvey

Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the ... Read more

November 14, 2018November 9, 2018

Where the Heck Is Matt?

Columns, Little Victories - a Column by Matthew Lafleur

It doesn’t make sense, and I’ve given up trying to figure it out. It’s a silly video sponsored by a chewing gum company that paid a man to travel the ... Read more

November 9, 2018March 7, 2019

Find a Workplace that Treats Your Disabilities with Dignity

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

In my hotel hospitality job, I can count on working long hours, multiple days in a row, and on holidays and weekends. I knew what I signed up for ... Read more

November 8, 2018November 6, 2018

My Journey to a Friedreich’s Ataxia Diagnosis, Part 2

Columns, My Darling Disability - a Column by Kendall Harvey

Second in a series. In a previous column, I discussed my active childhood and early signs that something wasn’t right. As the evidence began to pile up, I started ... Read more

November 7, 2018November 6, 2018

Vacation Endings and Beginnings

Columns, Little Victories - a Column by Matthew Lafleur

Last in a series of reflections on a recent vacation to Turks and Caicos. Read previous reflections here. “I began my vacation today,” Jake told me over video chat. That lazy ... Read more

November 5, 2018November 2, 2018

10 Lessons I’ve Learned from Having FA

Columns, Fighting FA - a Column by Frankie Perazzola

It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain ... Read more

November 2, 2018November 2, 2018

Don’t Let Fear of Missing Out Spoil Your Trip

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

My husband Justin and I returned last week from our honeymoon in the Bahamas following our beautiful wedding on Oct. 20. I was determined that I wouldn’t let Friedreich’s ... Read more

November 1, 2018October 30, 2018

My Journey to a Friedreich’s Ataxia Diagnosis, Part 1

Columns, My Darling Disability - a Column by Kendall Harvey

First in a series. From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in ... Read more

October 31, 2018October 30, 2018

The Caribbean Was the Perfect Spot to Set Aside My Fierce Independence

Columns, Little Victories - a Column by Matthew Lafleur

A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my ... Read more

October 24, 2018October 30, 2018

Sunny Days on Vacation with My Nephew Jace

Columns, Little Victories - a Column by Matthew Lafleur

In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with ... Read more

October 22, 2018October 19, 2018

Becoming Involved in the FA Community Was the Best Decision I’ve Made

Columns, Fighting FA - a Column by Frankie Perazzola

Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why ... Read more

October 19, 2018October 18, 2018

Never Fear Putting Yourself Out There

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

This is the final countdown. The big day has finally come. Tomorrow, Saturday, Oct. 20, I am marrying the man of my dreams, Justin. These days, it is hard ... Read more

October 18, 2018March 4, 2019

I’ve Adopted the Concept of ‘Besides FA’

Columns, My Darling Disability - a Column by Kendall Harvey

I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells ... Read more

October 17, 2018October 16, 2018

The Mother of Vacation Origins

Columns, Little Victories - a Column by Matthew Lafleur

In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with ... Read more

October 12, 2018October 11, 2018

How Friedreich’s Ataxia Brought Me Closer to My Faith

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

My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my ... Read more

October 10, 2018October 9, 2018

Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA

Columns, Little Victories - a Column by Matthew Lafleur

First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing ... Read more

October 5, 2018October 4, 2018

6 Tips to Prepare for rideATAXIA, the Big Bike Ride

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

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern ... Read more

October 3, 2018October 1, 2018

Learning to Live in the Present

Columns, Little Victories - a Column by Matthew Lafleur

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; ... Read more

September 28, 2018March 7, 2019

Before Dining Out, We Do Our Research

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

Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans to go to various public places. “Ramps should be the standard. ... Read more

September 27, 2018February 8, 2019

New to Friedreich’s Ataxia?

Columns, My Darling Disability - a Column by Kendall Harvey

The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was ... Read more

September 26, 2018March 29, 2019

The Algebra of Dating with FA: The Ex and the Why

Columns, Little Victories - a Column by Matthew Lafleur

“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing ... Read more

September 24, 2018September 20, 2018

A Letter to My Endlessly Loving Mother

Columns, Fighting FA - a Column by Frankie Perazzola

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — ... Read more

September 21, 2018March 7, 2019

Walk a Mile in an FAer’s Shoes

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

Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with Friedreich’s ataxia. I want to be ... Read more

September 20, 2018March 19, 2019

I’m Not Yet Sure How to Fight My Fatigue

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I ... Read more

September 19, 2018September 17, 2018

Daydreaming and Other Ways of Coping

Columns, Little Victories - a Column by Matthew Lafleur

“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for ... Read more

September 17, 2018April 18, 2019

In Case of Emergency, Don’t Have a Disability

Columns, Fighting FA - a Column by Frankie Perazzola

It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been ... Read more

September 14, 2018March 8, 2019

Don’t Judge Yourself for Needing Help

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

The three-day Labor Day weekend often means relaxing and spending time with people you may not often see. This holiday, my fiancé Justin and I visited his hometown near ... Read more

September 13, 2018March 4, 2019

Seasons of Life with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the ... Read more

September 12, 2018September 10, 2018

FA Progression and Childhood Spies

Columns, Little Victories - a Column by Matthew Lafleur

In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were spies. Spies! My aunt and ... Read more

September 6, 2018March 5, 2019

The Emotional Workout of Physical Therapy

Columns, My Darling Disability - a Column by Kendall Harvey

In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until ... Read more

August 31, 2018March 8, 2019

Tips for Traveling with Friedreich’s Ataxia

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

When you plan a destination or a weekend getaway, it is wise to make travel and transportation arrangements and detail an itinerary of what you will do while on ... Read more

August 30, 2018August 28, 2018

My Big (Literal) Break

Columns, My Darling Disability - a Column by Kendall Harvey

Editor’s note: This post includes images of a bone break that may be disturbing to readers. For some time now, I’ve needed to use a walker (or another mobility ... Read more

August 29, 2018August 27, 2018

I’m Still Pedaling to Keep My Oath

Columns, Little Victories - a Column by Matthew Lafleur

I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of sweat trickled down from my hairline, along the sides of my face. ... Read more