August is Spinal Muscular Atrophy Awareness Month

This week, Governor JB Pritzker is expected to sign House Bill 889. It’s a measure sponsored by Representative Dan Swanson that mandates insurance coverage for antibiotic therapy for a person with a tick-borne disease. Swanson drafted the legislation after working with the family of Lauryn Russell – a Mercer County Junior High student.

The month of August is also Spinal Muscular Atrophy Awareness Month. SMA Awareness Month, another measure sponsored by Swanson was enacted earlier this year, as well as, the amendment to the Newborn Metabolic Screening Act. The bill requiring all newborns be provided with screening tests for the presence of spinal muscular atrophy was signed into law by then-Governor Rauner last year. Swanson worked closely with a local family on that legislation as well: Randy and Tracy Parlier and their daughter Lilly. “As with Lyme Disease, (I) worked with a mother there, and now (the same) with SMA,” Swanson said.  “There’s nothing like the passion of a mother with a sick child. It’s taught me to listen to the mothers and to understand what their families are going through. I know with the Parlier family, it’s not a normal household. When you go to their house, you can see all the special requirements that are needed for Lilly on a day-to-day basis than most families don’t deal with. (It) brings a whole new appreciation.”   Swanson added that benefits for families like the Parliers are held throughout the year – and he encourages the public to support families like them. For more information on SMA and SMA Awareness Month, visit www.curesma.org.