One of my favorite things to do is to raise awareness about Friedreich’s Ataxia (FA) since many people don’t know what it is, or even heard of it.

What is FA?

FA is a rare, progressive neuromuscular disorder that causes loss of coordination and muscle strength, among some other things which lead to mobility aids like walkers or wheelchairs.

Just some things to know:

• Symptoms and rate of progression vary with each patient. Loss of balance and coordination is often noticed first.
• Those with FA have a mutation which reduces the protein frataxin. Frataxin is essential to energy production.
• FA can cause 2 serious heart conditions, Cardiomyopathy and Arrhythmia.
• Cognition is NOT affected. FA is only physical but can also cause emotional struggles.
• Many have aggressive scoliosis which requires spinal fusion surgery.
• 10% of people with FA have Type 1 Diabetes.
• In the later stages of FA, patients can lose their vision, speech, and hearing.
• 6-8 years after diagnosis, most lose the ability to walk unassisted.

To learn more about FA, visit https://curefa.org/whatis.

Who is FARA?

FARA is the Friedreich’s Ataxia Research Alliance, a non-profit organization that is dedicated to finding a cure for FA. They raise funds for scientific research, promote public awareness, and align scientists, patients, clinicians, etc. that want to cure FA or other related diseases.

To learn more about FARA, visit https://www.curefa.org/about/fara-s-mission-and-organization

One day we will #CureFA

Although there is no cure for FA, the first treatment was approved in February 2023. This is a huge accomplishment for FARA, and the FA community hopes this treatment leads to more in the future.

To donate to FARA, go to https://www.curefa.org/ways-to-help/ways-to-donate