We received the Families of Spinal Muscular Atrophy's Directions newsletter and were surprised to find Ryan's name among the pages. The money collected at Ryan's funeral was donated to FSMA and Jenn wrote a letter to explain why we were sending the money to their organization. We had no idea that they would publish the letter, which explains why there was no picture of Ryan to accompany the letter. Click on the link below and check out page 47. You may also flip through the other 90 pages to get a small idea of how many people/families SMA touches throughout the world. Some of the stories are very similar to our own.