31 Days of SMA: Community and Music Festivals

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by Kevin Schaefer |

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Day 18 of 31 Days of SMA⁣ Topic: Community and Music Festivals⁣ ⁣ This is @adynsdream story:⁣ ⁣ We all belong to multiple communities. In 2005, Adyn was diagnosed with SMA Type 2 when she was 16 months old. This was before social media connections & even though our young family’s need for community was strong, we felt as if we were on an island. As soon as we attended our first Cure SMA conference, we discovered a community that we immediately felt comfortable around & to discuss matters even our friends couldn’t relate to.⁣ ⁣ When Adyn was around nine, she started branching into a community that began taking on a new meaning to her, the music community. Even though she’s been attending music festivals her entire life (since she was 4 months old) as she grew, so did her love of music, specifically with bluegrass/Americana music. After attending @delfest in 2013, she was able to spend quality time with @crowmedicine – which opened the door to this amazing community of musicians. Adyn traveled to CLE & Nashville to see OCMS 2 more times that year, and she couldn’t get enough live music in her life. It was on the way home from Nashville when she decided to merge the SMA & music communities, and created @adynsdream. ⁣ ⁣ Since creating Adyn’s Dream in 2014, Adyn has raised over $70,000 for the SMA community by hosting a variety of live music events. She started out with some of her favorite local artists, later hosting nationally known bands for her SMA benefits. Some of these incredible artists include @pokeylafarge, @billystrings, @dustbowlrevival, @caamp, @the_tillers, @birdsofchicago, @doc_robinson_, @theharmaleighs, and @jonstickleytrio. As Adyn became more involved in the music scene, her interest in getting to know her favorite bands grew as well. She met & became friends with artists such as @shovelsnrope, @sierradawnhull, & @thesteelwheels! These friendships gave Adyn insight into their world, and also gave them an insight to SMA community!⁣ ⁣ ⁣ Adyn’s Dream uses the money raised for 2 things: we provide sponsorships for SMA families to attend their first @curesmaorg conference and we created the Adyn’s Dream Secret Santa program.⁣

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About the Author

Kevin Schaefer avatar
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.

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31 Days of SMA, Adyn's Dream, community, SMA Awareness Month
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