In Gibson City, IL, students at Gibson City-Melvin-Sibley High School (GCMS High School) are fighting to find a cure for Friedreich’s ataxia (FA). 

According to reporting from Jared Thomas of WCIA, a former student of Gibson City-Melvin-Sibley High School—Emily Young—learned that she had FA. Her community wanted to rally behind her. But what could they do? 

The GCMS community decided to chip in to support a cause close to Young’s heart: the Friedreich’s Ataxia Research Alliance (FARA). This national 501(c)(3) nonprofit organization is dedicated to advancing scientific research into finding treatments and a cure for FA. 

In December 2023, the GCMS Falcons raised $10,000—and presented it to Young and her family. This donation will help FARA to expand research and understanding in this realm.

Want to join in and make a difference? Consider making your own donation here to the Friedreich’s Ataxia Research Alliance. 

What You Should Know About Friedreich’s Ataxia

FRDA gene mutations cause Friedreich’s ataxia, a rare genetic neurodegenerative movement disorder. Normally, FRDA plays a role in mitochondrial function by producing frataxin. Friedreich’s ataxia is inherited in an autosomal recessive pattern, which means that someone must inherit two mutated genes to have this condition. 

Typically, symptoms of FA appear between ages five and fifteen. An estimated 25% of affected individuals have late-onset FA, in which symptoms appear after 25 years old. Very late-onset FA sees symptom manifestation after age 40. These later-onset forms typically experience slower disease progression.

Symptoms associated with this condition may include: 

• Difficulty moving and poor coordination (ataxia)
• Slurred speech (dysarthria)
• Scoliosis 
• Diabetes
• Foot abnormalities
• Cardiac arrhythmias
• Fatigue
• Shortness of breath

Individuals with FA may use wheelchairs or other mobility aids for support. Additional treatments and interventions include dietary modifications, genetic and psychological counseling, visual or auditory corrective devices, and certain medications. 

The U.S. Food and Drug Administration (FDA) also approved Skyclaris (omavoloxolone) for people with FA ages 16+. While this is not a disease-modifying therapy, Skyclaris has been shown to reduce disease progression.