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.
Today’s 31 Days of SMA speaks for itself: Heather Kerstetter is the activist the disability community needs right now.
Heather just graduated in May with her Masters of Social Work and is now working as a Program Specialist in Philadelphia. She emphasizes how social work is more than caseworkers and family services and how she has taken a more policy-based approach.
For Heather, her job is centered on a disabled person’s rights in the workplace and how employers can navigate potential barriers when hiring a disabled employee. She goes into further detail with us here, but in a nutshell, Heather is doing AMAZING things.
Have you ever experienced discrimination in the workplace because of SMA? What did you do?
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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