Columns

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, 2018January 31, 2018

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

November 27, 2017November 22, 2017

With FA, Public Restrooms are More Than Problematic

Columns, Fighting FA - a Column by Frankie Perazzola

As if public restrooms aren’t already a headache for the average person, being able to use only the handicap stalls is one of the most frustrating processes I and ... Read more

November 20, 2017November 20, 2017

Always Adapting

Columns, Fighting FA - a Column by Frankie Perazzola

I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span ... Read more

October 30, 2017October 27, 2017

Sorting out Your Relationships

Columns, Fighting FA - a Column by Frankie Perazzola

The ultimate test of any type of relationship in my life began the day I was diagnosed with FA. Friendships, family ties, and intimate relationships were all put through ... Read more

October 23, 2017October 22, 2017

Dishing Up Anxiety

Columns, Fighting FA - a Column by Frankie Perazzola

You know that feeling when you’re at a store and the cashier gives your change back and a couple of people are behind you? It seems like you can’t ... Read more

October 9, 2017October 9, 2017

Why I Choose to Participate in Clinical Trials

Columns, Fighting FA - a Column by Frankie Perazzola

You can ask my entire family — they’ll tell you I was fully willing to participate in clinical trials from day one. I’m assuming it was a combination of the ... Read more

October 2, 2017September 29, 2017

Call It FA-tigue

Columns, Fighting FA - a Column by Frankie Perazzola

It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s completely exhausting. After doing a load ... Read more

September 25, 2017September 25, 2017

My Perspectives on Mobility Devices: I Get Around

Columns, Fighting FA - a Column by Frankie Perazzola

If you look at the walls in my house, they are riddled with fingerprints. When I am asked about my stage of progression and my mobility, I say that ... Read more

September 18, 2017September 18, 2017

A Page for Paige

Columns, Fighting FA - a Column by Frankie Perazzola

Until recently, I genuinely thought I had a grasp on my life-shorting diagnosis. I lost that grip the moment I heard a fellow FARA Ambassador had suddenly passed away. ... Read more

September 11, 2017September 9, 2017

Even in a Maddening Answer, a Sense of Relief

Columns, Fighting FA - a Column by Frankie Perazzola

“Why can’t you help bring in the groceries?” “Are you that lazy?” “Are you that drunk, already?” “Why are you so tired all the time?” “Why do you always ... Read more

August 28, 2017August 31, 2017

Life, Disease, and Renewed Hopes and Dreams

Columns, Fighting FA - a Column by Frankie Perazzola

As a kid, I shared similar career aspirations as my friends ― astronaut, marine biologist and lawyer were my top three. With high hopes and a head stuck in the ... Read more