Newly Diagnosed: You Are Not Alone on Your FA Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with FA and that others have been in your shoes. Here’s a collection of some of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

New to Friedreich's Ataxia?

social media, walker, emotions, friends

Columnist Kendall Harvey went through a range of emotions when she was diagnosed with FA at age 25. Here she addresses each of the emotions she went through to help those who have been newly diagnosed, as well as their friends and family, process their feelings.

Read Kendall's column

Growing Into Life With a Disability

omaveloxolone, warrior

Columnist Matthew Lafleur talks about accepting life with a disability. As a kid, he wanted to hide from what his future with FA would look like. Now, he finds his wheelchair fits him like a worn T-shirt that was too big when he was younger but which he’s since grown into.


Read Matt's column

What I Would Tell Someone Newly Diagnosed With FA

Columnist Frankie Perazzola reflects on what she wishes someone would have told her when she was first diagnosed with FA, namely that you can still do the things that make you happy. So go ahead and rock those heels in your wheelchair!

Read Frankie's column

As Parents and Caregivers, We Can Find Beauty in Life With FA

Columnist Katie Griffith’s oldest son, Noah, was diagnosed with FA in 2018. Their lives abruptly changed with his diagnosis, but they’ve found ways to embrace the life they’ve been given and keep moving forward. It may not be the life they imagined, but there is still beauty in the little moments.

Read Katie's column

I’m Grateful for My FAmily

hope, middle age

Although columnist Sean Baumstark feels a lot of animosity toward FA, he is also filled with gratitude for the connections he’s made because of it — his FAmily. Members of the FA community rally behind each other, lift each other up, and provide daily reminders that no one is alone in their struggle.

Read Sean's column

I Might Be Rare, but I Am Not Alone

omaveloxolone, warrior

After being diagnosed with FA at age 11, Matt remembers feeling isolated and like his friends were leaving him behind. If he could go back in time, he would tell that kid that being rare doesn’t mean being alone, and although he may now be traveling at his own pace, it doesn’t mean he’s been left behind either.

Read Matt's column
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Join Your FA Community

A great way to connect with the FA community is by visiting the Friedreich’s Ataxia News forums, where you can discuss issues, ask questions, and share your experiences with others.

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