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.
Hey everyone! Hope you’re all doing well. Check out my latest video here.
In this episode of the Morale Monologue, I discuss the importance of talking to your doctors about risdiplam. This oral therapy is extremely promising for those of us with spinal muscular atrophy (SMA). Currently, we expect the FDA to make a decision regarding risdiplam in August of this year.
Now is a great time to talk with your specialists, and see if this treatment option would work for you. I give you some guidelines for what questions to ask, and other related information. Hope you all enjoy this video.
Have you spoken with your doctors about risdiplam? What other questions do you have about this treatment?
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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