Alyssa Silver: Daring to Be Remarkable in the Face of Spinal Muscular Atrophy

Source: Alyssa K. Silva.

The jury is still out on the effectiveness of the drug on adults with SMA, and it has also not been without its controversy.  Spinraza is considered to be one of the most expensive drugs in the world, making it somewhat inaccessible to just the very people who need it. Alyssa has documented her experience with the drug on her blog. Her open and honest storytelling is powerful to read, and while initially, she did notice an improvement in her breathing and ability to speak. She has not recorded other improvements thus far.