Cure SMA is a voluntary-driven organization that provides support to patients and families affected by spinal muscular atrophy (SMA). As part of Cure SMA's mission to provide support for families, the non-profit organization provides care packages for families when their baby is diagnosed with SMA. We are honored to be included in it and recently spoke with Shannon O’Brien, Senior Director of Community Support at Cure SMA, about the care package and what it provides for families.
For people not familiar with Cure SMA, tell us what the organization does.
One of our main goals is we are committed to changing the lives of people with SMA and providing support for them. SMA is a progressive neurodegenerative disease that affects motor nerve cells in the spinal cord. This impacts the muscles used for activities such as breathing, eating, crawling, and walking. It is the number one genetic cause of death for infants.
Part of that support is the care package program, which includes the Otteroo. Tell us how that helps families.
Our Community Support department has a range of programs, but the most popular program is our newly-diagnosed care package program. When a family faces a diagnosis of SMA, we send out a care package full of toys and other helpful items that are recommended by other parents whose babies have SMA. It helps to welcome them into the community and let them know that they are not alone in the journey they’re about to go on.
What does the care package include?
It varies based on the type of SMA the baby has been diagnosed with and the baby’s age. A lot of the items included are recommendations from other families. Multiple families highly recommend Otteroo so we try to include that whenever possible. Each package is customized for the diagnosed child’s needs.
Otteroo provides our infant neck float to you at a discounted rate to help you get them to the families that need them. How else are you able to provide the items in the care package?
Oftentimes, families who have had a child with SMA will purchase items for the care packages in honor of their children. That has happened with the Otteroo, the most recent donation to the Cure SMA newly diagnosed care packages was from the Devine family of California.
What do families like about the Otteroo?
While some families are hesitant to use it in the beginning, most families say they end up loving it because their baby is able to move their arms and legs in the water. The babies don’t have to worry about fighting gravity, and parents love being able to see their baby move freely on their own because they typically can’t do it on land.
To learn more or to request a care package, please head over to Cure SMA’s website.