Take a passing glance at Rob Survick’s tattoo – a giant octopus around his forearm, and you might think he’s just a big fan of marine life. However, look a little closer and you’ll see this isn’t any ordinary tattoo. Wrapped up in the octopus’ tentacles there are finely detailed motor neurons, and that’s when you know there is clearly a deeper meaning here.

“The tattoo was something that was always part of my bucket list,” says Rob. “The octopus is my favorite animal. And I always thought it would be cool to have an octopus tattoo. I guess when you have ALS, sometimes you think now’s the time if you're going to do it."

Rob is an assistant gymnastics coach at Arizona State University who also competed on the team in the late 90s and early 2000s. He first began noticing weakness in his left arm in 2018 while coaching Youth Olympic games in 2018. He hoped surgery on a herniated disc would improve things the next year, but the weakness continued to grow. After months and months of doctors’ appointments – a timeline complicated by the early days of the COVID-19 pandemic – he received a diagnosis of ALS in August of 2020.

After his ALS diagnosis Rob resolved to continue to pursue his biggest passion, coaching gymnastics, for as long as he possibly can. He also threw himself into ALS activism – finding a new community that inspired him and a fight that energized him, even in the face of his diagnosis.

“Since then, I've discovered so many great people within the ALS community,” he says. So, I just jumped in and joined and have been part of the advocacy fight, calling for the Act for ALS, trying to make an impact there. As well as trying to make an impact on Twitter and social media.”

Inspired by his own fight, Rob decided it was time to do something else he had always dreamed of – getting a tattoo. He worked with a local Arizona tattoo artist, Toby G of North Mountain Tattoos, to design something that would represent his hope for the future.

“The octopus is a symbol of regeneration in the tattoo world,” he says. “That's what it symbolizes. I put it in a sea of motor neurons, and if you look at it the octopus is repairing the motor neurons. So, the hope is, someday I’ll be able to regenerate if I Am ALS can win our battles and get all sorts of drugs approved that should be approved and fix the broken ALSFRS system.”

Rob’s outlook is particularly inspiring – despite all that he’s facing, he continues to work tirelessly to advocate for reforms that he believes will benefit all people with ALS. He’s also using social media to keep people updated about clinical trials – he’s currently enrolled in the Healey Platform trial, and posts about his experiences. He credits a large part of his passion for these causes to the strength of the community that he’s discovered since his diagnosis.

“It's so unfortunate to have ALS,” he says, “but this community has been so incredible to get to know. They say it's the nice guy's disease, and I think that's pretty evident. There are so many great people I feel so blessed to have already had encounters with, and I know I'm going to meet more great people. You know, I just I'm excited to fight for the rest of my life to help end ALS.”

It was through another prominent ALS advocate, Phil Green, that Rob discovered the ALS Therapy Development Institute (ALS TDI), who he considers an important part of the overall fight to end ALS.

“I just really love that they are 100 percent committed to ALS and bringing drugs to trial,” says Rob. “There are so many aspects of this problem that need to be attacked, and ALS TDI is attacking it from the ground floor, working to find new drugs and, hopefully, making them available for people. I don't think there's anybody else better out there in the community that's doing that part of the project right now.”

You can find Rob Survick on twitter @RobDBack. To learn more about ALS TDI and their role as the Drug Discovery Engine for ALS, click here.

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