In February 2023, Erin Hicks and her daughter Madi faced a life-altering moment. After a visit to the National Institutes of Health in Seattle, Madi, a vibrant 12-year-old soccer player from Kansas City, Missouri, was diagnosed with juvenile dermatomyositis (JDM). “We walked out feeling overwhelmed and lost,” Erin recalls. Research fueled panic as Madi’s condition worsened, her energy fading on the soccer field. Hope was slipping away.
Then, they learned about the Cure JM Family Conference. “There was no option,” Erin says. “We were going.” In June 2023, Erin, Madi, Madi’s dad, stepmom, brother, and Erin’s parents traveled to the Gaithersburg Marriott in Washington, D.C., seeking answers and connection.
A Turning Point in D.C.
The conference, held June 29 to July 2, 2023, came just four months after Madi’s diagnosis—a critical time as their lives felt like they were spiraling. “The timing was meant to be,” Erin says. “Without it, we would have stayed in the dark.”
What stood out most was the wealth of information. Erin absorbed sessions on sunscreens, research updates, and managing JDM’s challenges. A moms’ group and teen panel offered practical advice and emotional support. “Every part increased my knowledge of our new life,” Erin says. For Madi, meeting other kids with JDM was transformative. “She went from rock bottom to the sky,” Erin shares. “She started to understand herself again.”
Meeting families like the Caldwells and Renfrows was a blessing. “We felt alone and segregated before,” Erin says. “Finding others in the same fight was the most rewarding part.” Madi bonded with Catie Beth, who became like an older sister, and Jackson, a fellow soccer player diagnosed around the same time. These connections gave Madi confidence and a sense of belonging.
The D.C. setting added to the experience. After navigating the airport’s chaos, the Gaithersburg Marriott’s calm, with its scenic pond, felt like a metaphor for their journey—from fear to hope. On Sunday, they joined the National Walk Strong around that pond, proudly holding a Kansas sign, united with families who felt like kin.
Lasting Bonds and New Strength
The conference forged lifelong connections. Erin stays in close touch with the Caldwell and Renfrow moms, meeting for coffee or dinner when nearby. Last year, they organized a Midwest walk together. Madi relies on Catie Beth and Jackson for support, calling Catie Beth with good news from doctors and sharing soccer struggles with Jackson. “These kids are her staples,” Erin says.
“The conference saved our lives,” Erin reflects. “It gave me hope and peace, and confidence that Madi can lead a normal, long life.” It empowered Erin to advocate for Madi and showed her that JDM doesn’t define their family. “We went from grieving to celebrating her life,” she says.
Why Chicago 2025 Matters
Erin urges families to join the 15th Cure JM Family Conference in Chicago, June 27 to June 29, 2025, at the Hyatt Lodge in Oak Brook. “You may feel alone, but you’re not,” she says. “Others are fighting for your child.” The conference offers cutting-edge research, family meetups, and the National Walk Strong—moments to find strength and community.
Registration closes June 2, 2025, at curejm.org/conference. A day rate option for Saturday, June 28, will be available from June 2 to June 20 for Chicago-area families. “The comfort of belonging is like getting your life back,” Erin says. “Cure JM makes us stronger.”
Join Erin, Madi, and the Cure JM family in Chicago. Together, we fight for kids with juvenile myositis to heal faster, feel stronger, and thrive.
