NW Illinois News

In an Aug. 9 Facebook post, Rep. Dan Swanson told his constituents about Spinal Muscular Atrophy Month, which is August. He shared that he sponsored and passed a bill to recognize the cause.

"August is Spinal Muscular Atrophy (SMA) Month," said Rep. Swanson. "I presented and passed House Resolution 159 to bring awareness to SMA," 

Spinal Muscular Atrophy is a condition that “affects the motor neurons – nerve cells that control voluntary muscle movement.” These are in the spine and because they don’t respond to the signals they get from nerves, they atrophy. The condition can affect children at any age, according to Johns Hopkins Medicine. It is a genetic disorder, and patients may develop scoliosis, and later have breathing and swallowing issues.

Swanson sponsored and passed House Resolution 0195 to bring awareness to Spinal Muscular Atrophy. The resolution “declares August 2023 as Spinal Muscular Atrophy Awareness Month” in Illinois and “encourages continuing research on spinal muscular atrophy and community support for those affected with the disease,” according to the legislative page for the resolution. Rep. Swanson filed the bill on April 14, 2023, and it was adopted on May 18, 2023.

There are five primary types of Spinal Muscular Atrophy, and it affects approximately 1 in 11,000 births in the United States, according to Cure SMA, the leading national organization dedicated to providing support and programs for children affected by SMA and their families. Cure SMA notes that 1 in 50 individuals is a carrier for the disease. Symptoms in children include noticeable weakness, developmental delays, and difficulty running and keeping up with their peer group. It is diagnosed with a genetic test by blood sample. Babies are screened for SMA at birth.

There are currently three treatments available to patients who have SMA. They are Spinraza, which is allowed for all ages. Evrysdi is another that is allowed for all ages, and a third drug, Zolgensma, was approved in 2019 for use in children less than two years old. Spinraza consists of four doses over two months, then one dose every four months. Evrysdi is a daily treatment, and Zolgensma is a one-time treatment.