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
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
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
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
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
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
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
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 ... Read more
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 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
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 ... Read more
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
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
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
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
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
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
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 ... Read more
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 ... Read more
Caring for a child with a chronic illness such as Friedreich’s ataxia can be very stressful and can take its toll emotionally. The Friedreich’s Ataxia Parents’ Group suggests ways ... Read more
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 ... Read more
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 ... Read more
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. ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
This year’s annual International Ataxia Research Conference (IARC) will be taking place in Pisa, Italy from September 27 to 30. MORE: Life at college with Friedreich’s ataxia Held in the ... Read more
Caring for a child with a chronic illness such as Friedreich’s ataxia can be very stressful and can take its toll emotionally. The Friedreich’s Ataxia Parents’ Group suggests ways ... Read more
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 ... Read more
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, ... Read more
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, ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
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 ... Read more
