Columns

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, 2018September 27, 2018

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, 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 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, 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 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, 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 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

August 24, 2018August 23, 2018

My Favorite Age Is Now

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

March 7, 2018March 7, 2018

Disability Throughout History

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

Throughout history, fear of the abnormal has been deeply ingrained in the human psyche. Disability as a supernatural punishment In ancient times, impairment was believed to be the result ... Read more

March 5, 2018March 7, 2018

FA Weekend in SoCal Was Inspiring

Columns, Fighting FA - a Column by Frankie Perazzola

The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, ... Read more

March 2, 2018March 2, 2018

Disability and Social Isolation

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

Disability can be an isolating experience, depending on its severity and a person’s willingness to look past it. Of course it’s incredibly isolating. Every single disabled experience is unique, ... Read more

February 26, 2018February 23, 2018

A Love Letter to the City of Angels

Columns, Fighting FA - a Column by Frankie Perazzola

Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize ... Read more

February 21, 2018February 20, 2018

Breaking Down Barriers in Care Settings

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

Why is it so hard for some people to recognize that people with a disability are human as well, with the same needs and wants we all have? I ... Read more

February 12, 2018February 9, 2018

Common Decency Isn’t Too Far-fetched

Columns, Fighting FA - a Column by Frankie Perazzola

Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had ... Read more

February 8, 2018February 7, 2018

Friedreich’s Ataxia and Marriage: Dealing with the Diagnosis

Columns, My Darling Disability - a Column by Kendall Harvey

When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead ... Read more

February 7, 2018February 6, 2018

Why a Cure Isn’t Everything to Me Anymore

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

When I was younger, I just wanted to be healthy and able-bodied. When I went to sleep, I always dreamed of myself as walking; I never saw my wheelchair ... Read more

February 1, 2018February 7, 2019

Pregnancy and Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I would have really poor quality of life and that all of the ... Read more

January 31, 2018January 30, 2018

No One Knows Your Body Better than You Do

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

Growing up with a rare condition, I always relied on doctors and specialists to know how best to deal with my troubling body. Like most people, I left it ... Read more

January 25, 2018January 25, 2018

An Introduction to My Darling Disability

Columns, My Darling Disability - a Column by Kendall Harvey

My name is Kendall and I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. I grew up in Katy, Texas, where my childhood was quite happy. I was always ... Read more

January 24, 2018January 23, 2018

Accessibility for Wheelchair Users

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

Last year, my eyes were opened to high-needs disabilities when I moved out of my home and into a shared living situation with in-home care around-the-clock. It became obvious ... Read more

January 17, 2018January 16, 2018

Laughing in the Face of Adversity

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

For those of us with FA or any other disability, overcoming adversity is part of our daily lives, to the point where we don’t even notice it anymore. There ... Read more

January 15, 2018January 15, 2018

Before the #CureFA Mission

Columns, Fighting FA - a Column by Frankie Perazzola

  Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or ... Read more

January 10, 2018January 10, 2018

The Intertwining of Education and Disability

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

I was diagnosed with Friedreich’s ataxia (FA) as an 11-year-old. When I was about 15 or 16, the reality of my diagnosis hit me and I found myself struggling ... Read more

December 18, 2017December 18, 2017

Becoming the Best Version of Me that I Can Be

Columns, Fighting FA - a Column by Frankie Perazzola

With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, ... Read more