Posts by: Frankie Perazzola

Frankie Perazzola

Frankie lives with Friedreich's ataxia in the city of Los Angeles, California. She writes about her life experiences as an independent 28-year-old woman dealing with rare neuromuscular disease. Frankie focuses on utilizing physical fitness and writing for BioNews as her main coping mechanisms for FA. Through her column, “Fighting FA,” she helps others with internal growth and self-acceptance

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 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

August 13, 2018April 18, 2019

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, 2018April 18, 2019

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, 2018April 18, 2019

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, 2018June 3, 2019

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 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 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 19, 2019

How to Handle Feeling Like a Burden While Living With FA

If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad ... 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 1, 2018March 22, 2019

Why the Movie ‘The Ataxian’ Is So Important to the FA Community

On February 26, 2018, the movie The Ataxian was finally released to the public. If you’re not familiar with the film, it features Kyle Bryant and Sean Baumstark, two ... 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 15, 2018

Friedreich’s Ataxia Patient Spotlight: John Cernosek

Meet John Cernosek from Maryland! John lives in Silver Spring with his beautiful girlfriend, who also happens to have FA. He’s 34 years old and was diagnosed with Friedreich’s ... 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 8, 2018

Friedreich’s Ataxia Patient Spotlight: Laura Wright

The Friedreich’s Ataxia Patient Spotlight is another method of raising awareness for Friedreich’s Ataxia. With an understanding of a rare disease and how crucial it is to get the ... Read more

February 5, 2018

Friedreich’s Ataxia Patient Spotlight: Madelyn Frederick

Since there are 15,000 people who share the same genetic mutation, also known as Friedreich’s Ataxia, it’s important to share each other’s stories and perspectives. The FA community is ... Read more

February 1, 2018March 26, 2019

How to Find Your Coping Mechanisms

Let’s just put it all out on the table: depression and anxiety come with having Friedreich’s Ataxia. The sadness, frustration and angst that you feel is legitimate and is ... Read more

January 25, 2018March 26, 2019

How Physical Activity Can Help You Deal With the Progression of FA

After being diagnosed with a neuromuscular disorder with no set treatment plan and no cure, optimism and proactiveness may seem like a stretch. You may feel like there’s nothing ... 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 11, 2018March 26, 2019

3 Tips for Explaining Your Disease

In today’s world, it’s become a trend to share every detail of your life — people always want to hear your story. No matter who you are, people are ... Read more

January 4, 2018

Setting New Year’s Goals When You Have Friedreich’s Ataxia

January is the perfect time for new goals, new hobbies and a fresh start. The whole “new year, new me” phenomenon is in full effect with motivation at an ... Read more

December 20, 2017

How to Handle the Holidays When You Have Friedreich’s Ataxia

It’s that time of year again. It’s time to gather with your friends and family for the holidays and wait for the flow of uncomfortable questions to start. It ... 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

December 13, 2017March 22, 2019

Why Patience Is So Important When You Have FA

Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening. The fact you have to depend on someone else to live your life definitely causes tension and ... Read more

November 30, 2017

How to Handle Feeling Like a Burden While Living With FA

If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad ... Read more

November 28, 2017March 26, 2019

Common Communication Issues When You Have FA

As an FA patient, it can be difficult to effectively communicate your exact needs, hesitations or fears to those whose help you need the most. It can seem nearly ... 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

November 16, 2017March 27, 2019

How to Find Your Motivation When You Have FA

When it comes to getting out of bed or starting your day, it can be difficult to do just that. It’s much easier to stay in your pajamas all ... Read more

November 6, 2017March 27, 2019

Why It’s Important to Have Friends or Acquaintances With FA

No matter the circumstance, it makes sense to maintain relationships with those who are in the same, or in a similar, situation as you are. You can tell someone ... Read more

October 30, 2017August 2, 2019

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, 2017June 3, 2019

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, 2017June 3, 2019

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, 2017June 21, 2019

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