Believe it or not, SMA information, especially information on how to care for a child with SMA, is on the decline. The number of children diagnosed with SMA isn't getting smaller, so what's causing this? The answer may surprise you: Facebook. To understand this, you have to understand a bit about the internet & Facebook (which are not the same thing) and a bit more about how Google searches work - which is the key to the whole issue.
Read the top 5 reasons Facebook is failing SMA
Today, a majority of diagnosed families are on Facebook, using a private invitation-only group called SMA Family. There have been another 10-15 groups that have split off from SMA Family such as SMA Moms, SMA Support System, SMA Family Toxic-Free Lifestyle, IEP Support SMAstyle and nearly countless other small ones. Every few weeks someone seems to create yet another group, in the hopes of being the next "big thing." Almost all these groups are private, so you'll need to be invited.