Columns

November 16, 2018November 15, 2018

4 Tips for Preparing to Attend a Football Game

A Practical Guide to Life with FA - a Column by Christina Logan, 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, 2018November 8, 2018

Find a Workplace that Treats Your Disabilities with Dignity

A Practical Guide to Life with FA - a Column by Christina Logan, 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 Logan, 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 Logan, 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, 2018October 17, 2018

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 Logan, 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 Logan, 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, 2018September 27, 2018

Before Dining Out, We Do Our Research

A Practical Guide to Life with FA - a Column by Christina Logan, 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, 2018September 25, 2018

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, 2018September 25, 2018

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, 2018September 19, 2018

Walk a Mile in an FAer’s Shoes

A Practical Guide to Life with FA - a Column by Christina Logan, 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, 2018September 18, 2018

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, 2018September 14, 2018

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, 2018September 11, 2018

Don’t Judge Yourself for Needing Help

A Practical Guide to Life with FA - a Column by Christina Logan, 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, 2018September 11, 2018

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, 2018September 4, 2018

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, 2018August 29, 2018

Tips for Traveling with Friedreich’s Ataxia

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

August 24, 2018August 23, 2018

My Favorite Age Is Now

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

I know that birthdays can be tough for some patients living with Friedreich’s ataxia. It can be a reminder of how much this disease keeps taking from us each ... Read more

August 22, 2018August 20, 2018

Finding the ‘Why’ and Bearing the ‘How’

Columns, Little Victories - a Column by Matthew Lafleur

Reminders of life’s beginning and end kept cropping up unexpectedly this week. My 4-month-old niece was baptized, initiated into her parents’ faith, and began a journey. Days later, I ... Read more

August 17, 2018August 16, 2018

An Introduction to a ‘Practical Guide to Life with FA’

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

My name is Christina Logan, and doctors diagnosed me with the rare neuromuscular disorder Friedreich’s ataxia at the age of 21. I grew up in Holland, Pennsylvania, with my ... Read more

August 15, 2018August 14, 2018

The Day I Began Tracking My ‘Little Victories’

Columns, Little Victories - a Column by Matthew Lafleur

In an instant, my plans and dreams vanished; I was left wandering through life with no set future, and it was scary. I can remember parts of that day ... Read more

August 13, 2018August 10, 2018

How a Television Show Changed My Thought Process

Columns, Fighting FA - a Column by Frankie Perazzola

I often have conversations with others about the mindset and positive outlook I attained while dealing with this illness. Although I realize this may be temporary and my attitude ... Read more

August 6, 2018August 2, 2018

Birthdays Don’t Have the Same Meaning Anymore, Thanks to FA

Columns, Fighting FA - a Column by Frankie Perazzola

Birthdays used to be so fun for me. Now, though, they are just reminders that this disease is taking over my physicality slowly. While I have a positive attitude ... Read more

June 25, 2018June 22, 2018

It’s OK to Be Honest About Your Emotions

Columns, Fighting FA - a Column by Frankie Perazzola

Last month was Mental Health Awareness Month, so I thought this might be a good time to discuss this issue head-on. Some days can be harder — way harder ... Read more

June 11, 2018June 7, 2018

Going Through the Depression Tunnel with Friedreich’s

Columns, Fighting FA - a Column by Frankie Perazzola

It’s been tough lately. Just when I thought there was a light at the end of my depression tunnel, it got dark again, and I found myself having to ... Read more

April 16, 2018April 13, 2018

Moving Out Despite Friedreich’s Ataxia

Columns, Fighting FA - a Column by Frankie Perazzola

Following my Friedreich’s ataxia diagnosis in June 2015, one of the first things the doctors told me was that I would progressively lose my ability to live independently and ... Read more

April 12, 2018April 11, 2018

Fight or Flight in FA Patients

Columns, My Darling Disability - a Column by Kendall Harvey

Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a ... Read more

April 9, 2018April 6, 2018

My Experience with Advocacy in Baltimore

Columns, Fighting FA - a Column by Frankie Perazzola

Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, ... Read more

March 28, 2018March 27, 2018

Please Don’t Refer to My Caregivers As ‘Slaves’

Columns, Through My Eyes - a Column by Jamie-Lee Dwyer

When I was a little girl, I used to have this recurring fantasy every so often in which I was Queen of I don’t even know what, with all ... Read more

March 22, 2018March 20, 2018

What rideATAXIA Means to Me

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of ... Read more

March 21, 2018March 19, 2018

Voluntary Euthanasia Is a Complex Topic

Columns, Through My Eyes - a Column by Jamie-Lee Dwyer

I’m going out on a limb here to talk about one of those controversial issues that tend to get skated around a lot in disabilities communities: voluntary euthanasia (VE), ... Read more

March 19, 2018March 22, 2018

Your Diagnosis, Your Choice

Columns, Fighting FA - a Column by Frankie Perazzola

Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with ... Read more

March 8, 2018March 7, 2018

Dealing with Progression

Columns, My Darling Disability - a Column by Kendall Harvey

As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease. When diagnosed, I accepted it pretty quickly. I obviously knew that something was ... Read more