Social Clips

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

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

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

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

Learn More About the MOXIe Clinical Study for Friedreich’s Ataxia

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…

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

Friedreich’s Ataxia News: A Look Back at 2017

With the holiday season in full swing, it’s the perfect opportunity to take a look back at 2017. It’s been a year full of ups and downs, and while there were definitely quite a few low moments, there were certainly quite a few highs. To celebrate the year that was,…

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

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

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

Ronde Barber and Kyle Bryant Talk About Friedreich’s Ataxia

In this video, Tampa Bay Buccaneers’ football player Ronde Barber talks about his involvement with the non-profit organization, Friedreich’s Ataxia Research Alliance (FARA), and spokesperson Kyle Bryant talks about what it’s like to live with Friedreich’s ataxia (FA). MORE: Researchers create heart cells to study FA-related heart…

5 Things to Know About an Ataxia Diagnosis

If you or a loved one have been diagnosed with ataxia, it’s normal to feel overwhelmed and concerned about what the future has in store. We’ve compiled a list of some of the most commonly asked questions about ataxia using information from the National Ataxia Foundation.

Why rideATAXIA Is So Important to the FA Community

Every year, thousands of people from all over America set out on their bikes in support of Friedreich’s ataxia. The event, aptly called rideATAXIA, has been going on since 2007. What started as a self-described “crazy idea” initiated by Kyle Bryant, an FA patient who was…

A Look at Life With Friedreich’s Ataxia

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…

Explaining Friedreich’s Ataxia

Friedreich’s ataxia (FA) is a genetic and progressive neuromuscular disease that attacks the body’s nerves and muscles. Usually occurring in childhood, symptoms of FA typically appear between the ages of 5 and 18. Fewer than 25 percent of individuals affected by FA develop the disease in adulthood, according to the …

3 Important Friedreich’s Ataxia Topics That Will Be Discussed At #IARC2017

From Sept. 27 to Sept. 30, the second International Ataxia Research Conference is taking place in Pisa, Italy. Like the inaugural conference in 2015, the meeting will bring together patients, doctors, patient advocacy groups, researchers, pharmaceutical companies, regulators and others interested in the different forms of ataxia (including Friedreich’s). MORE: How CrossFit…

What Life Is Like With Friedreich’s Ataxia

  Unless you live with Friedreich’s ataxia, it’s hard to really understand what daily life is like with the genetic disease. It’s incredibly important that patients, caregivers and medical professionals continue to talk about FA, in order to keep raising awareness of this life-changing condition — which is exactly why…

Why the Friedreich’s Ataxia Scientific Symposium Is So Important

  Every year, the Friedreich’s ataxia community comes together to discuss the treatment of the disease. Scientists, researchers, medical professionals, patients and caregivers all gather in an effort to learn more about FA and figure out the best way to work together to find a cure.

How CrossFit Is Helping One Man With FA

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…

Research Update: Treating Friedreich’s Ataxia

Typically diagnosed in early childhood or adolescence due to increased clumsiness, Friedreich’s ataxia (FA) is a progressive neurodegenerative disease that worsens over time. Eventually, most patients will lose motor function and become confined to a wheelchair. Many will also suffer from heart failure.

5 Major Symptoms of Friedreich’s Ataxia

Friedreich’s ataxia (FA) is a rare genetic disorder where the body produces antibodies that limit the production of frataxin, a protein vital for nerve and muscle health. A lack of frataxin leads to muscle depletion and other symptoms. While the disease can develop at any time, it typically presents between the ages of…

The Medical Management of Friedreich’s Ataxia

While there is no cure for Friedreich’s ataxia, there are treatments that can help patients manage symptoms and improve their quality of life. Treatment for Friedreich’s ataxia consists of medications, physical therapy, and surgery according to the Muscular Dystrophy Association. MORE: Five major symptoms of Friedreich’s ataxia Heart problems associated with…

9 Things to Know About the Inheritance of Friedreich’s Ataxia

Friedreich’s ataxia is an inherited disease that affects movement and coordination. It’s a progressive disease with symptoms including loss of strength, weakened muscles, spasticity, impaired speech, hearing and vision problems, and in some cases diabetes and scoliosis. MORE: Five major symptoms of Friedreich’s ataxia Here are some important facts about the inheritance…

Patient Stories: Jamie Lee and Sam Dwyer

In this video from Georgia Maher, we meet Jamie Lee Dwyer and her sister Sam who both suffer from the rare degenerative neuromuscular disease, Friedreich’s ataxia. It’s estimated the girls are two of between 300 and 500 people living with the disease in Australia.

The Medical Management of Friedreich’s Ataxia

While there is no cure for Friedreich’s ataxia, there are treatments that can help patients manage symptoms and improve their quality of life. Treatment for Friedreich’s ataxia consists of medications, physical therapy, and surgery according to the Muscular Dystrophy Association. MORE: Five major symptoms of Friedreich’s ataxia Heart problems…

5 Types of Treatment for Friedreich’s Ataxia

Friedreich’s ataxia (FA) is a genetic neuromuscular disease that can lead to motor control issues and often leads to the inability to walk, problems with the senses and swallowing, and later in life, heart complications. There is no cure for the disease, but there are ways to manage the…

Patient Stories: Life at College With Friedreich’s Ataxia

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…

5 Things to Know About an Ataxia Diagnosis

If you or a loved one have been diagnosed with ataxia, it’s normal to feel overwhelmed and concerned about what the future has in store. We’ve compiled a list of some of the most-commonly asked questions about ataxia using information from the National Ataxia Foundation. What…

Ronde Barber and Kyle Bryant Talk About Friedreich’s Ataxia

In this video, Tampa Bay Buccaneers’ football player Ronde Barber talks about his involvement with the non-profit organization, Friedreich’s Ataxia Research Alliance (FARA), and spokesperson Kyle Bryant talks about what it’s like to live with Friedreich’s ataxia (FA). MORE: Researchers create heart cells to study FA-related heart…

5 Major Symptoms of Friedreich’s Ataxia

Friedreich’s ataxia (FA) is a rare genetic disorder where the body produces antibodies that limit the production of frataxin, a protein vital for nerve and muscle health. A lack of frataxin leads to muscle depletion and other symptoms. While the disease can develop at any time, it typically presents between the ages…

Explaining Friedreich’s Ataxia

Friedreich’s Ataxia (FA) is a genetic and progressive neuromuscular disease that attacks the body’s nerves and muscles. Usually occurring in childhood, symptoms of FA generally appear between the ages of 5 and 18. Fewer than 25 percent of individuals affected by FA develop the disease in adulthood, according to the…