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.
I wanted to let you all know that Cure SMA is doing some virtual social events for families and adults with SMA soon. The next adult social will take place on Tuesday, September 22nd at 7:00 pm CT. You can contact Cure SMA for information about where to register and get on their email list.
These socials are a lot of fun! Especially in a time when we’re physically isolated from people, this is a great way to connect with the SMA community. Hope to see many of you there!
Has anyone here done any fun virtual events lately?
I keep meaning to attend one of those. I’ll try my best on the 22nd haha.
As you know since we did it together, virtual trivia was something new and fun to do! I’m also in the process of planning a virtual walk fundraiser for my nonprofit organization that’s taking place next month. We’re calling it Walktober which I think is just so fantastic. Lastly, I’m planning a virtual coffee hangout for this weekend with my other job which I think will be a lot of fun.
I’m really starting to feel so mentally drained from this entire year, so I’m extra grateful for technology that allows me to still connect with the world.
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.