This year, SRNA held awareness months from March to July. We chose one rare neuroimmune disorder to raise awareness for each month. During this time, we started holding virtual events to offer a time for the community to learn from the experts and connect with one another. Additionally, these initiatives included sharing personal stories on social media. Our hope was to help the public better understand rare neuroimmune disorders: what they are, what they look like, and the impact they can have.
In July we shared Noah’s story for Acute Flaccid Myelitis (AFM) awareness month: “There is so much more research that needs to be done on rare neuroimmune disorders. There is no cure, and the frontline medications were not guaranteed to stop the paralysis or reverse the damage,” Noah’s mom Elisa explained. “We have come a long way since October 3, 2014. I am happy to report Noah is walking with a gait trainer and has a very hopeful future in front of him. This was made possible by the quick actions of physicians who were educated (which is rare!) and knew about this rare disorder and their quick thinking. Most of all it’s possible because Noah works every day to gain back what AFM tried to take from him.”
Read other stories and learn more about the other rare neuroimmune disorders awareness months here.