In addition to serving local agricultural needs, the Bale Barn also donates a percentage of each sale to fund research and support families living with Spinal Muscular Atrophy (SMA).
In 2010, our son, grandson, and nephew, Colin, was diagnosed with SMA at the age of thirteen months. SMA is a debilitating, often fatal, genetic neuromuscular disease that destroys the nerves controlling voluntary muscle movement. This can prevent children from crawling, walking, controlling their head and neck, and in some cases, even swallowing. After Colin's diagnosis, his family and friends were passionate about taking action to support children with genetic disorders, particularly SMA, and fund research for a treatment or cure. And after years of fundraising, in late 2016, a treatment was approved for SMA patients: Spinraza.
Spinraza is an injection administered into the fluid surrounding the spinal cord. Patients who received this treatment have shown positive results including achieving developmental milestones and slowing the progression of SMA. Colin has received these Spinraza treatments himself, and has shown remarkable progress.
In addition to supporting SMA research, we've also been able to give back to local organizations that support children with disabilities such as our local schools, Camp Courageous, Cure SMA, the Miracle League of Dubuque, and Small Heroes, Mighty Cause.