Advocate Calls For Increased Attention To Rare Disease

Spinal Muscular Atrophy Awareness Month Highlights Need for More Conversation and Action

Advocate Calls for Increased Attention to Rare Disease

August is Spinal Muscular Atrophy (SMA) Awareness Month, and advocates are calling for more conversation and action around the rare disease. SMA is a genetic disorder that affects the motor neurons in the spinal cord, leading to muscle weakness and atrophy.

While there have been significant advances in treatments for SMA in recent years, advocates say there is still not enough awareness of the disease. "SMA is a devastating disease that can have a profound impact on the lives of those affected," said one advocate. "We need to do more to raise awareness and support research so that we can find a cure."

SMA affects about 1 in 8,000 babies born in the United States. The severity of the disease can vary, but it can lead to muscle weakness and atrophy in the arms, legs, and trunk. This can make it difficult for people with SMA to walk, talk, and breathe. In severe cases, SMA can be fatal.

There is currently no cure for SMA, but there are treatments that can help to improve the quality of life for people with the disease. These treatments include physical therapy, occupational therapy, and speech therapy. There are also several new drugs that have been approved to treat SMA in recent years.