Families impacted by Duchenne muscular dystrophy (DMD) can find strength through taking action and reaching out for support, as discussed in a panel of parents and caregivers at the CureDuchenne 2025 FUTURES National Conference.
The talk, entitled “Everyday Champions: Stories of Strength, Connection, and Action,” included insights from eight families who shared their personal journeys of hope, connection and community impact.
A major theme of the panel was the need to reach out for support — something several of the participants said they had difficulty with after receiving the initial diagnosis of their child’s DMD.
Kris Horne, the father of a 4-year-old boy with DMD, said at first he only felt comfortable letting immediate family know about the diagnosis. “I’m not accustomed to reaching out, asking for help, opening up or being vulnerable so it was hard for me,” he said.
His son’s mother, ReAijah Ford, who also has another son with DMD, acknowledged that the disease was too painful to even speak about at the beginning. “It’s something I internalized and kept to myself,” she said.
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Another dad on the panel who initially kept his child’s diagnosis close to his chest admitted that he and his family didn’t want the stigma often associated with chronic illnesses.
But each of these families said they had moments where they realized opening up and connecting with others over DMD was not only helpful for them emotionally, but benefitted their children, as well.
“We don’t know what we don’t know, as far as getting assistance, and if I’m not out there advocating for him, he’s not going to be able to advocate for himself,” Horne said. He also shared that hearing other families open up about DMD at CureDuchenne events inspired him to do the same.
The families discussed reaching out to their families, communities and places of worship, which were often eager to lend support in any way they could.
“People really want to help,” one mom who adopted a boy with DMD shared.
Raising money for research on DMD, a condition for which there is no cure, was another major topic of discussion. Kate Miner Moebel, the grandmother of a young boy with DMD, said she hosts parties to raise awareness and money for the disease, while Tim Revell, another father on the panel, raised $15,000 for DMD by running a marathon.
Ultimately, the panelists agreed that through the ups and downs of living with DMD, connection and community are invaluable in helping families persevere through the challenges the disease brings.
“We know the feeling of hopelessness, of feeling lost, of feeling confused, and questioning ‘why would this happen to me?’” said father Ramiro Munoz, who emphasized the importance of connecting with other families on social media, in communities, and at events like CureDuchenne’s national conference. “It’s about helping one another because in this fight, we’re not alone.”
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