Hayden Howard is a 22-year-old from Ohio living with Friedreich’s ataxia (FA) and figuring things out as she goes. She loves watching scary movies, doing her makeup, and spending time with friends. She’s currently tracking her journey with FA and finding her balance in more than one way. My…

Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling…

There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood…

“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…

I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to replace it before it gets to that point. If you want to save for yourself or…

Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…

I’m not shy about my Friedreich’s ataxia (FA) diagnosis and how it’s affected my life. I share all of the twists and turns of my FA journey openly, all in the name of raising awareness, inspiring hope, and removing the feeling of isolation that so many people with…

I am the proud mother of two darling young children. My son, Brooks, is 8, and my daughter, Collins, is 5. To make December even more magical, they still believe in Santa Claus. I was recently laughing with a friend as we discussed the ridiculous lengths we have gone…

I recently binged four seasons of the television series “The Handmaid’s Tale.” I will spare you my enthusiastically detailed summary except for this: The main character, June Osborne, is a prisoner in the household of a commander and his wife in Gilead, a totalitarian society in what used…

In a conversation with a friend, she said, “I guess everything happens for a reason.” Hearing this really bothered me, even though that phrase is pretty ubiquitous; I’ve heard it repeatedly. Behind the phrase is the message that everything will be all right. Sometimes, we desperately need to hear this…

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 — than others. Every single person on earth has problems and horrible situations they deal with throughout their…

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 about hanging out with your friends because you know how much work it will be for them or how much help…

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 FA patients along with two of their lifelong friends as they complete the Race Across America (RAAM) — also known as…

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 Ataxia at the age of 19. His responses to these questions were eye-opening and we enjoyed reading his perspective…

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 word out, we are excited to share people’s stories and perspectives from all over the world. This week, coming to you…

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 bigger and closer than most people think — patients are diagnosed at different ages, stages and various locations all over the…

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 shared with every other FA patient. The mental health aspect can be just as debilitating as all the other major health complications…

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 you can do to help your situation or change your fate. However, there are things you can physically do to possibly…

Later this month, Jennifer Farmer, Executive Director of FARA and Dr. Keith Ward, CDO of Reata Pharmaceuticals, will be hosting two meetings to discuss the initial results of the MOXIe clinical study. The meetings will focus on sharing the data from part one of the study with the patient…

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 more curious than ever and like to engage in more meaningful conversations. Maybe it has to do with the popularity and…

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 all-time high. It always seems like people are more focused than ever at this time of year!  But why does that…

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 seems as though nobody listens or pays attention to the seriousness of Friedreich’s ataxia and having to repeat the same thing…

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 can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you…

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 about hanging out with your friends because you know how much work it will be for them or how much help…

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 impossible to tell family, friends, doctors, caregivers and others what you want. No matter how much your speech is or isn’t affected,…

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 day than to go through the process of getting ready and going out in public. It’s a whole different process for…

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 until you are blue in the face about your symptoms and try to explain exactly how FA makes you feel, but…

It’s hard for most people to understand what daily life is like for someone with Friedrich’s ataxia (FA). Thankfully, there are patients around the world who graciously allow strangers into their homes and lives to show exactly what their daily routine looks like. MORE: How CrossFit is helping…

Kyle Bryant was diagnosed with Friedreich’s ataxia at just 17 years old. Over the past 13 years, he’s struggled with hearing impairment, vision loss and heart complications (which will inevitably shorten his lifespan). He has symptoms of both scoliosis and diabetes, and has trouble moving, speaking and up until…

In this video from Randall Juip, Claire, a patient who was recently diagnosed with the genetic disorder Friedreich’s ataxia (FA), discusses the cause of the disease, its symptoms, and its history. MORE: Five types of treatment for Friedreich’s ataxia Claire, along with her brother Jack who…

In this video from Merissa Blitz, Alison Avery talks about living with Friedreich’s ataxia (FA) while at college. Alison is a freshman at Elon University in North Carolina and is studying human services. MORE: Five major symptoms of Friedreich’s ataxia Alison explains that Friedreich’s ataxia is…