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Susan Apkon, MD, Chief of Pediatric Rehabilitation Medicine at Children's Hospital Colorado, and her team, have been awarded a $60,000 grant for the first year, to partner with the Cure SMA registry, with additional funding for subsequent years. The goal of the Network is to improve the lives of all those with Spinal Muscular Atrophy.  As part of this network, Children’s Hospital Colorado will be participating in the SMA Clinical Data Registry. This grant is part of a 5-year multicenter Cure SMA clinical data registry.

Spinal muscular atrophy (SMA) is caused by a genetic change in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the motor neurons that control our muscles. Individuals with SMA don’t produce survival motor neuron (SMN) protein at high enough levels. Without this protein, those nerve cells cannot properly function and eventually die, leading to severe and sometimes fatal muscle weakness.

Cure SMA will be visiting with Dr. Apkon and her team at Children's Hospital Colorado on Monday, November 21, at 10:30 AM for a celebration of this critical partnership in the fight against SMA. Even before being named a care center, Dr. Apkon's team has been on the front lines of caring for patients living with SMA, and this partnership will only elevate their important work.