Having a close family member with ALS is an extremely difficult situation for anyone, at any age. For Logan Brunner and Skyler Rodriguez, it’s a reality they've known for nearly their entire lives. Logan is seven years old, and his father, Eric, was diagnosed with the disease in 2020. Skyler is nine, and his dad, Jules, was diagnosed that same year.
Both boys come from families that have passionately dedicated themselves to ALS advocacy. Eric, an artist, created a sculptural exhibition about the disease called Flickering Souls: Illuminating ALS. Logan’s mother, Allie, has documented their story extensively on social media. Jules has shared his ALS journey through stand-up comedy and the podcast he hosts with Skyler’s mom, Maria.
Inspired by their parents, Logan and Skyler have each found their own ways to become ALS advocates, spreading awareness about the disease among their friends, communities, and the wider world.
Logan’s ALS Website
“I like to tell people about ALS,” says Logan. “I say that it’s a disease, but not an ordinary thing like a cough, and they don’t know how to cure it yet. I like to let people know about it because my dad has it, and it’s something that you don’t really learn in school. It feels hard with my dad having ALS, because he gets slower, and it’s harder to do things. But I can still do fun things with my dad, like playing video games and coding.”
To further his goal of helping people—particularly other kids—learn about the disease, Logan is working on a website about ALS. Starting as a school project, Logan filled the site with online resources he found helpful in building his own knowledge of how ALS works and why we need more treatments to fight it.
“I made a website because I want my friends to know what I’m talking about when I talk about ALS,” he says. "I added some videos to teach them what it’s like and show what happens in the body when someone has it. ALS is a disease that can make you really sad. It makes me really sad that my dad has it. I just wish there was something to cure it. But one day there will be.”
While Logan’s website is currently only viewable by people at his school, Allie says that they are looking into ways to make his work more widely available. However, just seeing her son’s passion for teaching people about his father’s disease, despite all that they’ve been through, has already made her extremely proud.
“Logan will come out of school and say, ‘I was teaching about ALS again,’ she says. “He’s said, ‘Maybe when I grow up, I’ll be an ALS teacher.’ I'm grateful that it’s something he's able to talk about and something he wants to talk about, because I think that's important as we go through it.”
Skyler’s Book for Kids Dealing with Hard Times
While Logan is working to teach people unfamiliar with ALS about the disease, Skyler has focused his advocacy efforts on reaching out to other kids in situations like his. Inspired by a book his mother wrote for other caregivers, Skyler has become a published author himself. His first book, You’re Not Alone: A Journal for Hard Times, came out earlier this year.
“It's a book for other children who have problems like ALS or cancer, or other things like that,” says Skyler. “It's basically a whole bunch of questions and places where you can write out your answers to let your feelings out and help you on your journey.”
Skyler wrote his book as a guided journal, aiming to help other kids process their emotions and experiences as they navigate the challenges they face. He says that he worked with his mom to write each chapter based on their own conversations about how he was dealing with his father’s disease.
“We started out just like we were doing a podcast,” he says. “Then we’d take the words that we said and put them on paper, not exactly the way we said them, but in a way that made sense.”
Skyler hopes the prompts in his book help other kids develop ways to face the unknown that comes along with challenging circumstances like ALS.
“I hope they learn that, to not be scared, you have to face what’s going to happen,” he says. “You have to grow the courage and strength to fully understand what’s happening in life. There are things that you can’t fix, so you just have to take your time and make sure every moment counts.”
Supporting Each Other
Logan and Skyler clearly have a lot in common. Facing similar, extremely difficult circumstances, they both responded by looking for ways to raise awareness and help in the fight against their fathers’ disease. So, it makes sense that they would also become good friends. The boys first encountered each other online through their families’ advocacy and were finally able to meet in person earlier this year while attending Hope Loves Company, a camp just for kids whose parents or other loved ones have ALS.
“It makes you feel better,” says Skyler of what it means to make friends like Logan. “It shows you that there's other people facing your problems, you’re not the only one out there. You can understand each other. It’s easier to talk to them. Logan’s a really nice kid. He's really creative. I can see that, if he wants to keep influencing about ALS when he grows up, he would be really good at it.”
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