When Tavares Speer found out he had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, his reaction was one that many people diagnosed with ALS can relate to.
“It was just unbelievable,” he remembers. “I asked myself ‘is this really my life?’”
Around early 2015, he had noticed a light spasm in his left arm. At first, he ignored it, but it didn’t go away, and eventually started worsening. Soon he began what would be a years-long journey, including many inconclusive tests, failed treatments, and misdiagnoses, before he finally received a diagnosis of ALS in 2020. It was a tough realization for a young, otherwise healthy man. He was only 44, in shape, and a self-described “happy-go-lucky guy.” He had just moved to a new city in the Bay Area and married his partner, Eric.
“I had a choice to either just sink or swim,” he says of the days after his diagnosis. “I laid in bed for three days and cried and just didn't know what to do. But I figured, I have this limited amount of time, so I need to do something with it. And that's when I started my blog on Instagram, and just opened up about it, and started reaching out to people and finding that there were others like me.”
Tavares already had a large following on Instagram. At first, he was nervous about sharing something so personal with so many people. But he eventually decided that the opportunity to empower himself and raise awareness about ALS by telling his story was too powerful to ignore. He came out to followers with a post that said “I have ALS, but ALS doesn’t have me.”
“And from then on, it's just been a rollercoaster ride,” he says “People started reposting my posts and telling me how my openness and honesty gave them the courage to open up about themselves. Even if they didn't have ALS, if it was cancer, or if it was something else, It made me feel like, ‘wow, my voice makes a difference.’”
Looking at his feed today, a lot of his posts still have a fun, light tone not unlike many other Instagram influencers – pictures of Tavares and Eric at the beach or out to dinner, images of their cute dog, and funny memes. However, look a little closer and you will see posts about the realities of living with ALS, and posts raising awareness for organizations like the ALS Therapy Development Institute (ALS TDI).
While Tavares supports many ALS organizations, ALS TDI has a special place in his heart. He discovered ALS TDI early in his ALS journey, and became a participant in the Precision Medicine Program (PMP). Through the PMP, researchers at ALS TDI partner with people with ALS to gather data to learn more about this disease. In addition, PMP participants gain access to a portal to view their own data and monitor their disease progression.
Being able to share his data with ALS TDI scientists makes Tavares feel like he has a real part in the search for ALS treatments and cures.
“I just feel like I'm just working right with the researchers and the scientists,” he says. “I'm actually a part of the research.”
It’s the research, and the hope for effective treatments for himself and others living with ALS, that inspires him to use his platform to get the word out about ALS, and our work at ALS TDI.
“Whatever time I have here, I'm going to try to use it to spread the word,” he says” to spread awareness, and hopefully to help find a cure.”
Follow Tavares’ story on his Instagram page. To learn more about ALS TDI’s research to end ALS, click here.