Jamie Batiste never expected that the path to advocacy would begin in a childhood bedroom, where she and her brother Aaron spent hours pretending to host their own radio show. Those early moments—two siblings laughing, dreaming, and creating—sparked Jamie’s lifelong passion for storytelling. By fourteen, she was already working in radio, and a few years later, she found herself on ESPN Radio, living the dream she and Aaron once imagined together.
But behind the rise of her broadcasting career was a quieter, more painful story—one that would shape her purpose in ways she never anticipated.
Aaron’s Journey
Aaron’s first symptom was something easy to dismiss: tight muscles. Polymyositis often begins subtly, with muscle weakness that develops slowly over weeks or months. For Aaron, it took four years to receive an accurate diagnosis—an all-too-common experience for people with inflammatory myopathies, which are rare and frequently misunderstood.
Jamie and her family went from doctor to doctor, searching for answers, trying to understand symptoms that didn’t seem to match the Aaron they knew. He always acted “normal,” masking how much he was truly struggling. That’s the thing about myositis—it often hides in plain sight.
Losing Aaron to polymyositis changed Jamie’s life forever. “It still doesn’t feel real,” she says. “It’s something you never think will happen to someone you love.”
Finding Community
In the years after Aaron’s passing, Jamie found herself searching for meaning, for connection, and for a way to honor her brother’s memory. That search eventually led to The Myositis Association (TMA)—a community she wishes she had known about earlier. Through TMA, she found education, support, and a network of people fighting for awareness, research, and better outcomes for those living with myositis.
TMA’s resources helped Jamie understand the disease that took her brother, and they gave her a platform to turn grief into action.
Jamie didn’t stop at learning—she stepped into advocacy with the same passion she once brought to radio. In 2025, she secured proclamations in two states that recognize May as Myositis Awareness Month. Now she serves as the lead for TMA’s 2026 Proc 50 project, helping expand official recognition nationwide.
Jamie also uses her entrepreneurial spirit to give back. Through her jewelry brand, Rejected Hearts Club, she donates a portion of the sale of her handcrafted jewelry designs to TMA with every purchase, transforming art into impact.
Moving Forward
When Jamie thinks about her family’s experience, the thing she wants new physicians to learn is to embrace the art of patience and understanding with each individual. “Please believe what people are saying,” she urges, “and remember each patient is a human being, not just a number.”
For the myositis community, Jamie’s message is simple: “Take things day by day, and know that there are people in this world who truly care about you more than you know.”
Proclamation50 2026 is TMA’s aim to spur proclamations in all 50 states in the US for Myositis Awareness Month in May! This handy guide will help you draft requests you can send to your city, county, or state representatives asking them to officially designate May as Myositis Awareness Month. Please sign up to be one of our Proclamation50 participants!