Each August since 1996, Families of Spinal Muscular Atrophy, a nonprofit organization, has hosted an awareness month for Spinal Muscular Atrophy to raise awareness about the disease.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) describes diseases of motor neurons causing weakness and atrophy of muscles, usually in the arms, legs, neck, and those associated with breathing. Nerves that sense pain are not affected, neither are neurons associated with cognitive functions.
SMA is a rare disease affecting one in 6,000 to 10,000 people worldwide, and between one in 40 to 80 people carries the gene. Since SMA is inherited, each child born of parents who both carry the gene has a 25 percent chance of being born with SMA.
Diagnosis and Treatment:
There are at least four types of SMA with varying degrees of debilitation. Type 1, the most severe, is diagnosed upon birth. Infants are born with little muscle tone, little movement, lack of head control, and may have trouble breathing. Types 2-4 are milder, with weakness starting later in life. In type 4, muscle weakness onsets in adulthood. Unfortunately, there is no treatment for the weakness caused by SMA. Some people with the disease may need braces to help support their bodies and help breathing.
How can I help?
It can be devastating to families who receive a diagnosis of SMA. Families of Spinal Muscular Atrophy was established by several families who received a diagnosis, and needed a support group. They specialize in helping parents navigate the way through daily life with the disease. You can get involved with any of their events or make a donation directly to the organization.
Fight SMA is another nonprofit that was founded after a couple found out their son was diagnosed with SMA. Fight SMA focuses on funding research to find treatments for, ways to prevent, and a cure for the disease. You can make a donation to their efforts as well.