31 Days of SMA: Awareness and Advocacy

by Kevin Schaefer | August 28, 2019

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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."⁣

A post shared by SMANewsToday (@smanewstoday) on Aug 28, 2019 at 8:42am PDT

About the Author

Kevin Schaefer Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, BioNews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.