The Cure SMA educational campaign is designed to equip parents and healthcare professionals with the tools needed to recognize motor delays in spinal muscular atrophy (SMA) patients early, allowing infants and children to receive potentially life-saving treatment.
Called SMArt Moves, the program cites the fact that Spinraza and promising treatments have resulted in better outcomes and quality of life for those living with SMA, a disease that affects the part of the nervous system that controls voluntary muscle movement. But timely diagnosis and treatment are critical.
“Early action and treatment can be truly life changing,” said Rosangel Cruz, director of research and clinical affairs, Cure SMA, in a press release. “This swift action can result in positive results for so many with SMA.”
For example, she said, early treatment could lead to children being able to eat or breathe by themselves, or reaching key motor milestones.
The campaign’s centerpiece is a website that urges parents to trust their intuition if they suspect developmental delays, since such conditions could mean a disorder such as SMA.
The site explains to parents the milestones to look for, and includes educational videos and other advice. It also has a checklist to share with physicians and to help address parental concerns. List warning signs include skill loss, limited body movement, excessively loose limbs, and poor head control.
In addition, the site includes a section for healthcare professionals outlining current diagnostic criteria and treatment options, and educational resources.
“Simply put, learning the SMA warning signs, taking early action and getting early treatment can save, and dramatically improve, children’s lives,” Cruz said. “We want parents to trust their instincts, be informed and empowered to address developmental concerns with their pediatrician.”
The campaign was unveiled during Cure SMA’s symposium at the annual American Academy of Pediatrics Conference. It’s funded by members of the Cure SMA Industry Collaboration, a multi-faceted partnership that brings Cure SMA together with pharmaceutical companies and other groups to share information, ideas and data.
Roughly one in 11,000 infants will be born with SMA, the leading genetic cause of death for babies, according to Cure SMA.