Columns

March 13, 2019March 29, 2019

Decompressing from Life’s Complexities on a Lazy Sunday

Columns, Little Victories - a Column by Matthew Lafleur

  I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing ... Read more

March 11, 2019March 22, 2019

Using Both a Walker and a Wheelchair

Columns, Fighting FA - a Column by Frankie Perazzola

“Weren’t you just in a wheelchair? Why are you using a walker now? Are you getting better? If you can walk, why do you even have a wheelchair?” I ... Read more

March 8, 2019March 22, 2019

How to Plan a Grassroots FA Event

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

Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices ... Read more

March 7, 2019March 20, 2019

What Fundraising Means to Me

Columns, My Darling Disability - a Column by Kendall Harvey

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when ... Read more

March 6, 2019March 19, 2019

I’ve Learned to Face My Reality While Hoping for an FA Cure

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom ... Read more

March 1, 2019March 13, 2019

Alone We Are Rare, but Together We Are Strong

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

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the opportunity to share their experiences and raise awareness of the more than 7,000 known ... Read more

February 28, 2019March 13, 2019

Becoming Dependent Restored My Independence 

Columns, My Darling Disability - a Column by Kendall Harvey

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing ... Read more

February 27, 2019March 12, 2019

An FAer’s Reflection on Rare Disease Day

Columns, Little Victories - a Column by Matthew Lafleur

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have ... Read more

February 22, 2019March 12, 2019

Managing Fatigue in the Workplace

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

In a given week, a full-time employee can work five days and 40 hours or more. With all of these hours, it can feel as though a workplace has ... Read more

February 21, 2019February 27, 2019

Respecting My Body Despite Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world ... Read more

February 20, 2019February 27, 2019

I’m Both an FA Patient and a Cajun During Mardi Gras

Columns, Little Victories - a Column by Matthew Lafleur

I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no ... Read more

February 18, 2019February 25, 2019

To the Parents of Children with FA: I Commend You

Columns, Fighting FA - a Column by Frankie Perazzola

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from ... Read more

February 14, 2019February 22, 2019

The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial

Columns, My Darling Disability - a Column by Kendall Harvey

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” ... Read more

February 13, 2019February 22, 2019

The Anchor on My Wheelchair from My Steadfast FA Friend

Columns, Little Victories - a Column by Matthew Lafleur

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” ... Read more

February 11, 2019February 14, 2019

When in Doubt About Social Media Content, Just Be Honest

Columns, Fighting FA - a Column by Frankie Perazzola

Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? Should I discuss this topic? ... Read more

February 8, 2019February 14, 2019

The Power Behind the FARA Patient Registry

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

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research ... Read more

February 7, 2019February 14, 2019

When Life Hands You Lemons

Columns, My Darling Disability - a Column by Kendall Harvey

“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn ... Read more

February 6, 2019February 13, 2019

In the Waiting Room with FA

Columns, Little Victories - a Column by Matthew Lafleur

Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused ... Read more

February 1, 2019February 12, 2019

The Cure to Being Burdened by Shopping for Food

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

I used to enjoy going to the grocery store. I loved picking out items, seeing what’s new in stock, and hunting good deals in the store’s weekly ads. However, ... Read more

January 30, 2019February 1, 2019

Sometimes FA Makes Me Want to Be Invisible

Columns, Little Victories - a Column by Matthew Lafleur

Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing ... Read more

January 25, 2019February 1, 2019

Don’t Miss the Chance to Share Your FA Story

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

In a previous column, I wrote about the power of patient advocacy. I’m motivated to embrace advocacy in my everyday life to let the world know that disabilities come ... Read more

January 24, 2019January 31, 2019

Similarities in Parenting and Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom I always imagined I would be. Now that I have a couple ... Read more

January 23, 2019January 31, 2019

I’m Right Where I’m Supposed to Be

Columns, Little Victories - a Column by Matthew Lafleur

This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death ... Read more

January 18, 2019January 29, 2019

Advocacy Is a Powerful Thing

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

I recently saw a news article about a bridal store in England that not only made a positive impact on one future bride’s life but also on others’. The White Collection ... Read more

January 17, 2019January 24, 2019

A Friedreich’s Ataxia Explainer

Columns, My Darling Disability - a Column by Kendall Harvey

Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of symptoms, most of which are unique to FA and not easily understood ... Read more

January 16, 2019January 23, 2019

Introducing the Friedreich’s Ataxia News Forums

Columns, Little Victories - a Column by Matthew Lafleur

BioNews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, ... Read more

January 14, 2019February 18, 2019

Accessibility at the Los Angeles Memorial Coliseum: Thank You, LA Rams

Columns, Fighting FA - a Column by Frankie Perazzola

By the time you read this column, I hope to be celebrating a win for the Los Angeles Rams over the Dallas Cowboys — my favorite football team will ... Read more

January 11, 2019February 5, 2019

Setting a New Trend with Adaptive Wear

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

Everyone has a morning routine, a plan that sets the mood for the day. Most people become so used to the regimen that they carry out tasks on autopilot. ... Read more

January 9, 2019January 24, 2019

‘Bird Box’ Is Worth the Hype, Especially for the Disabled

Columns, Little Victories - a Column by Matthew Lafleur

Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning ... Read more

January 7, 2019January 3, 2019

New Year, Same Me. Just a Little Bit Better

Columns, Fighting FA - a Column by Frankie Perazzola

Let the New Year’s resolutions and “fresh start” cliches pour in to overwhelm timelines and news feeds. Ringing in the new year has always been a favorite time of ... Read more

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