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 hesitate sharing this because the more people who apply, the less chance I have to be chosen. On the other hand, it’s a great opportunity so I want everyone who qualifies to get a chance. A great organization, LAMN (Laughing at My Nightmare,) is having their “Tech the Halls” campaign where they’re awarding grants to applicants for iPads, Galaxy Tablets and Echo’s. To qualify you must have a neuromuscular disorder and follow the guidelines to apply. Here’s the link to find out more: http://www.laughingatmynightmare.com/2018-tech-the-halls
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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