Feb. 28 is Rare Disease Day, and Burbank local Tyler Roope is a public figure who is using his platform to entertain and inform his audience on the daily life of living with such a disease.
Spinal Muscular Atrophy is a neurodegenerative disease that, due to a mutation of the survival motor neuron gene 1 (SMN1), inhibits muscles that allow for vital activities like walking, eating and breathing. The disease impacts about 1 in 11,000 newborns, and there are four types of SMA based upon the severity of symptoms and when symptoms begin. Roope, who is now 24 years old, was diagnosed with type 2 SMA just before his second birthday, so for the vast majority of his life he’s navigated living with the disease. SMA limits the strength and movement of all of Roope’s voluntary muscles, such as his arms, legs, and neck.
Over time, the symptoms of SMA become worse, but Roope has recently begun treatment that has proven to be beneficial thus far. This is a big step in treating the disease, since, prior to this development, limited medical care and no cure has been available for patients with SMA.
“I started on the at-home treatment, Evrysdi, about six months ago and we’ve noticed that my breathing has improved, which is huge. That’s the number one thing for me, my torso strength and my breathing has improved,” Roope said. “And we’re hoping over time the progression of SMA can slow down or maybe even stop with the medication. So it’s very promising. It’s very exciting, for sure.”
Roope, whose father is originally from Cincinnati, is a lifelong sports enthusiast who dreamt of coaching the Cincinnati Reds as a child. As he attended John Burroughs High School, Roope became involved in the athletics program as the statistician of the school’s baseball team. Prior to this, while he was in middle school, Roope got to meet the players of his favorite baseball team, which he still remembers with fondness to this day.
“When I was young, I had a Make-A-Wish to meet the Cincinnati Reds, which is my favorite memory of all time. They flew me out there and I went to a game, went on the field, and played catch with the athletes,” Roope said. “Sports have been my whole life, [and] the number one thing that I love, honestly.”
After Roope graduated from Burroughs, he next studied at UCLA, where he graduated in 2020 with a double major in political science and sociology. He lived part-time on campus while student nurses provided care for Roope, which allowed him to become immersed in the culture of the university’s campus and witness some of the best young athletes in the country playing their respective sports.
“It was really nice to be able to have that opportunity to hang out with such cool people, and also being around athletes at a school like UCLA was my dream growing up … to be surrounded by these people that I would watch on TV,” Roope said. “Those two things were probably my highlights of my time at college.”
In recent months, Roope has started an account on the prominent social media app, TikTok, on which users post short videos that may be funny, entertaining, or interesting. Roope mixes up his content, sometimes sharing humorous anecdotes about interesting situations he’s been in as someone living with SMA, other times participating in TikTok dance trends, and more.
One story Roope told on TikTok was about a mishap he once experienced at his school’s annual Christmas show. After introducing a song during the production, Roope traveled down a makeshift ramp in his wheelchair, which the school staff had created for him to move offstage. However, the ramp wasn’t as stable as it should have been, and Roope subsequently took a tumble in front of the crowd.
“Filled with adrenaline and confidence, I head[ed] back down the ramp to meet my class, and I was a little too fast and a little too furious … I tilted forward and fell out of my chair,” Roope said in the video. “It was at this moment my face was introduced to the ground. We had never met before – hard guy to talk to, but solid dude.”
Calling upon the “the show must go on” mentality, Roope continued with the show and nailed the musical number he performed with his classmates. “They built a statue for me after this … they didn’t, but they should,” he joked at the video’s close.
Funny videos like this one have resulted in Roope gaining over 100 thousand followers and a total of 3.7 million likes on the app in just about six months. He says he’s become aware of the power of his platform, and, as a result, Roope has begun to increasingly use this space to expose followers to the realities of living with a disability while maintaining his infectious humor and fun personality.
“It’s very big right now and it’s fun to be a part of it,” Roope said of participating in TikTok as a social media influencer. “I’ve only recently been trying to transition into more advocacy for people like me … because I do have a platform now. I have to recognize that. But it’s very nerve-wracking. I never really know what I’m going to post. It’s kind of day-to- day, but I like making it funny.”
More than turning TikTok posts into calculated teachings about rare diseases, Roope instead focuses on just being himself. He says that candidly opening up and sharing his life with users of the app normalizes exposure to the disabled community, which is a great step in allowing a large audience to become accustomed to this group.
“I don’t know if people necessarily get stuff wrong [about living with a disability], but they might just not think about it enough,” Roope said. “I believe that there’s something to be said about just publicly existing as a disabled person so that people can see people like me more often and normalize it and get used to it.”
During his college years, Roope gained professional experience at Fox Sports as a production assistant, contributed to the California Collegiate Summer Baseball League as a media/production intern, and worked at Fred Dryer’s “The Sports Lounge” show on the CRN Digital Talk Radio Network as a producer and advertiser. He also hosted his own sports radio show at UCLA for two and a half years. He hopes to pursue sports production professionally while continuing to post more videos and expand on his impactful TikTok account.
“A lot of my experience has been in the sports production side of things, and in a perfect world, that would be something I would like to do. But I am facing a lot of challenges right now, trying to find work, especially being a disabled person trying to find work,” Roope said. “There’s a lot of hoops you have to jump through, a lot of things you have to be aware of, and it’s hard. It’s definitely a cycle, but I’m trying to be up to it. So we’ll see. Hopefully something soon, and maybe something with TikTok advocacy … that’s something I’ve been interested in recently as well.”
Thus far, Roope’s work on TikTok has already begun to make a big difference in the lives of his followers, including parents of disabled children who gain optimism through hearing Roope’s stories.
“The very first video that we did really well was a story about me going to the movies,” Roope said. “There were a few people in the comments that were saying, oh, my son has a similar disability of yours, and seeing your outlook on life makes me feel better about their future … and I remember screenshotting those comments and sending them to my friends.”
“Of course, to give somebody that [encouragement] makes it very worth it to just post a silly video. So, definitely those types of comments mean the most to me,” he added.
Follow Roope on TikTok here.
Safety information on Evrysdi can be found on Genentech’s site here.