Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.
Hi everyone. Since we’ve gained some new members recently, I just wanted to introduce myself here. My name is Kevin Schaefer, and I’m 24 with SMA Type II. I work here at BioNews Services, and part of my job is moderating the SMA forums.
Please feel free to contact me with any questions you have about the forums. Also, suggestions for discussion topics are always welcome. Our goal is to make this a platform for sharing information, experiences and questions related to life with SMA. I look forward to hearing from you all.
Viewing 0 reply threads
You must be logged in to reply to this topic.
FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.