Emma Terry is a dedicated I AM ALS volunteer and celebrated beauty queen with a mission: she wants to raise awareness of ALS and eventually “stomp out” the disease. Born and raised in Leads, Alabama (a suburb of Birmingham), Emma’s whole life has been marked by ALS: her grandfather Stewart Simpson had a slow-progressing type of ALS, also known as Lou Gehrig’s disease, and was living with the disease since before Emma was born. He lived with ALS for 22 years before he died in 2024 at the age of 86.
“I grew up watching him decline,” Emma says. “His case was different than most—because he was progressing slower, we had more time. But it took his voice right away. I never heard him speak.”
Emma and her tightknit family all live in the same area, so Emma’s childhood memories are filled with instances of caring for her ‘Grandy,’ as she called her grandfather. “When I was little, I remember asking why my Grandy couldn’t do certain things,” she says. “But I learned that he was sick and I learned that my family just worked together to take care of him. We had to be there for each other.”
One memory that sticks out to her was a night when she was 4 years old and at home alone with her mother. She recalls her mom pulling her out of bed in the middle of the night, helping her into the car, and driving down the road to her grandparent’s house. ‘Grandy’ had fallen out of bed and Emma’s mother was going to help. “I remember shaking his shoulders when we got there, telling him, ‘Grandy, you’ve got to get up,’ and trying to pick him up.” Later, at age 15, Emma remembers having to help clean up her grandfather after he had an accident while grocery shopping.
“It took me a long time to realize that this wasn’t normal—that not every kid helped take care of their grandparent,” she says. “That’s why I’m sharing my story. There are millions of other young people taking care of a loved one. And I know it’s easy to feel alone in these struggles. It’s important to find ways to share your story so you can know you’re not alone, and that your struggles are valid.”
As a caregiver to her grandfather, Emma learned resilience and to seek out joy in every day, even despite the challenges. “We tried to find ways to keep him feeling like his life was normal,” she says. For most of his life, her grandfather was well enough to be an active, if silent, participant in her life. He helped her with math projects growing up and was still physically active for most of his life.
In early 2021, when Emma was a freshman at the University of Alabama, her grandfather developed a bladder infection that led to his decline. He was bedridden for more than thre years and eventually died in April of 2024. After his death, Emma and her mother moved in with her grandmother, Billie Ann, who had never lived alone and had been married to Emma’s grandfather her whole adult life. Emma slept on the couch in her grandmother’s living room for more than eight months after Grandy’s death, continuing in her role as caregiver even after her grandfather’s passing.
Driven by her family’s journey, Emma was inspired to become an advocate for ALS awareness. She began by hosting a car show and other fundraisers to raise money and awareness for the cause in and around Birmingham. Next, she founded her own nonprofit, Stomping Out ALS. Throughout this time starting when she was a teenager, Emma competed in Miss America Organization competitions and currently holds the title of Miss Hoover 2025 (Alabama). Pageant competitions require that all contestants choose a philanthropy to support, but for Emma, the cause is personal. When she’s not studying accounting or preparing for competition, Emma is working to spread the word about ALS through her website, social media, and in-person advocacy and community outreach work.
“As a teen, [the community service requirement] empowered me to investigate what I was passionate about— but this is something I feel strongly about and wanted to stay involved in even after competing was over,” she says. Emma joined I AM ALS after Googling “ALS volunteer opportunities” when she was seeking a way to do more for ALS awareness. “I AM ALS is where I found my people.”
Since joining I AM ALS’ legislative community team, which is a volunteer-led team that helps advance legislative priorities for ALS, she’s found “a community that is like family.”
“Being a volunteer for I AM ALS pushes me to be a better advocate and continue to share my story even on the days that it’s hard,” Emma says. “It’s been life-changing.”
“This is a community of people that are going through the things I was going through. It opened up so many doors. When you realize that there are other people facing the same struggles, you feel less alone. To have this community of people who are like family… They give you motivation to keep going.”
Learn more about Emma and follow her as she competes for Miss Alabama in early June!
IG: @stompingoutals @misshoover2025