31 Days of SMA: Awareness and Advocacy

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by Kevin Schaefer |

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Day 28 of 31 Days of SMA⁣⠀ Topic: Raising Awareness & Community⁣⠀ ⠀ This is @schribs18 story:⁣⠀ ⠀ Raising awareness about SMA is critical in educating the public about life with SMA and the innovative treatments that are available and in-development, especially when you are talking about a rare disease. It’s important to not only raise awareness about the disease itself and those who are affected by it, but also about what causes it, early symptoms, the science behind new treatments, and what each person can do to one day find a cure. Personally, I try my best to educate people as much as I can in daily conversation to help teach people about the disease. In my experience, most people are not educated on SMA and the effects it has on families. Raising awareness is so powerful because it brings light to the disease itself, helps people begin to understand the sense of urgency in treatments and a cure, but also how far the community has come even in the last 15 years.⁣⠀ ⠀ I find myself very lucky to have interacted, met and become friends with so many amazing people within the SMA Community. This community is so strong, and each person, family member, and friend support one another, gets together for drinks, attends each other’s fundraising events, and is there for one another, no matter the distance.⁣⠀ ⠀ There is strength, hope, support and friendship within the SMA community and there is nothing more important than that. ⁣⠀ In the words of Margaret J. Wheatley, "There is no power for change greater than a community discovering what it cares about."⁣

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