On the occasion of World Spinal Muscular Atrophy (SMA) Day, which is observed annually on August 7, the Greek Parliament was illuminated tonight “as a minimal gesture of recognition for the challenges faced by individuals with SMA,” as emphasized in a related announcement. Additionally, Parliament underscores the need for equal access to early diagnosis, appropriate care, and innovative treatments.
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The initiative to illuminate Parliament aims to strengthen public awareness about Spinal Muscular Atrophy, a relatively rare neurodegenerative-neuromuscular disease that is genetically predetermined and, after cystic fibrosis, is considered the second most fatal disease for the Caucasian racial type.
What is spinal muscular atrophy
According to data from the EODY (National Organization for Public Health), the prevalence of the disease is estimated at approximately 1/30,000, and it is classified into 4 types determined according to age of onset and disease severity. All types of the disease are characterized by muscle weakness and atrophy of varying severity, primarily affecting the lower extremities and respiratory muscles. The weakness is almost always symmetrical and progressive. Clinical findings may also include: scoliosis, muscle fasciculations, and ligament injuries.
“The Greek Parliament, actively participating in the global awareness effort for this rare neuromuscular condition, joins its voice with international and domestic organizations, patient advocacy groups, and scientific communities, supporting the continuous effort to inform and strengthen the rights of individuals living with rare diseases,” the related announcement states.
