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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…

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…

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.

Cardiomyopathy in Friedreich’s Ataxia Detected Using an ECG

New research indicates that a complete assessment of heart function can identify cardiomyopathy in most people with Friedreich’s ataxia (FA), and that electrocardiography, especially, shows early heart abnormalities. The work, titled “The cardiomyopathy in Friedreich’s ataxia — New biomarker for staging cardiac involvement,” appeared in the…

Friedreich’s Ataxia Study Targets TORC1 Pathway as Possible Therapy

Recent research results indicate that targeting the TORC1 pathway could one day be a treatment for Friedreich’s ataxia (FA). The work, titled “TORC1 Inhibition by Rapamycin Promotes Antioxidant Defences in a Drosophila Model of Friedreich’s Ataxia,” was published in the online journal PLOS One. FA is a rare condition of…

Hereditary Cerebellar Ataxia Trial of Riluzole Raises Early Hopes

Treatment options for most hereditary ataxias are very scarce. Since 2014, drugs with known safety profiles have been tested in the treatment of hereditary ataxias such as Friedreich’s ataxia and spinocerebellar ataxia. A pilot study in patients with cerebellar ataxias of different causes has shown significant benefits upon riluzole treatment, a drug…

New Experimental System to Screen Drugs for Friedreich’s Ataxia

A recent study from researchers based in France described a new experimental system that can be used to identify drugs to treat Friedreich’s ataxia (FA). The research report, titled “A Yeast/Drosophila Screen to Identify New Compounds Overcoming Frataxin Deficiency,” appeared in the journal Oxidative Medicine and…

Functional MRI Used to Study of Neuropathology of Spinocerebellar Ataxia Type 7

A post-doctoral fellowship award has been given to Carlos Roberto Hernandez-Castillo, Ph.D. of Universidad Nacional Autonoma de Mexica, Coyoacan, Mexico to study the neuropathology of spinocerebellar ataxia type 7 using functional magnetic resonance imaging (fMRI). Spinocerebellar ataxia type 7 (SCA7) is an extremely rare genetic disorder that affects a brain area known as the cerebellum, which controls coordination.