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’m loving all the disability pride posts on social media! I’ve been sharing a lot on Instagram, but I also don’t want to overwhelm my followers with a dozen informative posts in a row, so I’m trying to space them out. I often feel left out in advocacy spaces, so it’s done my heart good to see so much solidarity.
Since we’re officially halfway through July (wild), do you have any plans for celebrating disability pride month? I hope to write a column on it next week.
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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