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Our story

FALA is the result of the efforts and dedication of a group of scout alumni, Anciens Scouts et Guides Saint Joseph Antoura – ASG. Every scout grows up with the belief of always giving without expecting anything in return, and that’s how ASG members, even years after leaving the active scout association, still gather every Christmas to plan and organize a social and humanitarian initiative.

What Is Friedreich's Ataxia

Friedreich's Ataxia, known as FA, is a recessive genetic neurodegenerative disease manifested by disorders of the gait, control of movement, speech difficulties, lack of balance and coordination of the upper limbs, along with muscle weaknesses associated with other neurological signs, as well as cardiomyopathy, diabetes, vision and hearing impairment.

FA is an inherited or single gene disorder, caused by mutations or DNA changes in the FXN gene.

There are 243 people in Lebanon diagnosed with Friedreich’s Ataxia, registered in the Ministry of Social Affairs. This list was last updated in 2017.

How is Friedreich's Ataxia Diagnosed

The first signs and symptoms are manifested either by a coordination disorder of the gait or by excessive fatigue and imbalance when using the stairs. If you ever experience these symptoms, contact your neurologist and he will refer to you other doctors

Electrocardiogram (EKG), which gives a graphic presentation of the electrical activity or pattern of the heartbeat

Magnetic resonance imaging (MRI) or computed tomography (CT) scan, which provides a picture of the brain and spinal cord

Electromyography (EMG) for evaluating and recording the electrical activity

Echocardiogram, which records the position and motion of the heart muscle

DNA taken from the blood cells for genetic testing

Treatments

IMPORTANT: Every person is strongly recommended to consult with his neurologist, cardiologist and physical doctor to assess his or her capacities and limits before undertaking any therapy and starting any medication.