Every day in August, we will feature a story from someone in the spinal muscular atrophy community to mark SMA Awareness Month. At the end of the month, our goal is to have a collection of stories that represent different perspectives on life with SMA that help to inspire and empower our readers. Follow along with the series here or visit us on Facebook and Instagram, using the hashtag #31DaysofSMA.
From left, Kevin, Bryce, Drew, Judy, and Delaney Soule. (Photo courtesy of the Soule family) Day 31 of 31 This is Drew Soule’s story: Living with SMA is not for the faint of heart, but someone has to…
Read morePhoto courtesy of Ross Hovey Day 20 of 31 This is Ross Hovey’s (@thesmartchap_rosshovey) story: Having just turned 43, I’m reflecting on my achievements in life and the regrets I have, which I am fortunate to…
Photo courtesy of Shailynn Taylor Day 19 of 31 This is Shailynn Taylor’s story: Hi! I’m a 26-year-old entrepreneur, university graduate, public speaker, and model, and I live with SMA type 2. I remember what the lack…
Photo courtesy of Madison Parrotta Day 18 of 31 This is Madison Parrotta’s story: From as early as I can recall, having SMA felt like being on the world’s largest Ferris wheel. There were ups and down,…
Photo courtesy of Kyra Richardson Day 17 of 31 This is Kyra Richardson’s story: Growing up with a SMA, I was often in and out of the hospital. At age 7, I had spinal surgery because my…
Carli Lynne Hamilton with her husband, Jared, and daughter, B. (Photo courtesy of Carli Lynne Hamilton) Day 16 of 31 This is Carli Lynne Hamilton’s story: I am Carli Hamilton. I was diagnosed with SMA when I was…
Zarek, left, and Zack Elizondo. (Photo courtesy of Zarek Elizondo) Day 15 of 31 This is Zarek Elizondo‘s (@sweetlifeofzackandzarek) story: Hi, my name is Zarek Elizondo. I’m 26 years old, and at 18 months,…
Céline and Amber-Joi. (Photo courtesy of Amber-Joi Watkins) Day 14 of 31 This is Amber Joi-Watkins’s story: My daughter, Céline, was diagnosed with SMA type 1 in December 2018, when she was 6 months old. My…
Photo courtesy of Steve Bingman Day 13 of 31 This is Steve Bingman’s story: Society often tells us that those with disabilities have a predicted path of life. What society doesn’t tell you is that your disability can be…
Photo courtesy of Ben Lou Day 12 of 31 This is Ben Lou‘s story: Hi, I’m Ben, a mathematician, physicist, and philosopher studying at MIT. I also have SMA type 2. You’ll find me…
Kristen and her son Jack. (Photo courtesy of Kristen Resendez) Day 11 of 31 This is Kristen Resendez’s story: As a mom, my favorite time of the year is the Cure SMA Annual Conference. It’s the only…
