NS Pharma opens Duchenne Heroes to share patient, caregiver insights

'We know how life-changing a Duchenne diagnosis can be,' says one mother

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by Mary Chapman |

A woman is working with a computer at a desk that also has books and papers.

NS Pharma has opened a program for people with Duchenne muscular dystrophy (DMD), and their caregivers and family members, to share insights that might help others living with this most common form of muscular dystrophy.

Called Duchenne Heroes, it relates the experiences of patients and family affected by Duchenne, and the muscle weakness and other disease symptoms it causes. Duchenne generally affects males, although females can carry the mutated DMD gene and some may experience a milder disease form.

In helping others deal with a muscular dystrophy diagnosis and navigate its progression, the program also seeks to heighten awareness of the disorder. First-person stories, which include videos, are shared on a website platform called WeSpeakDuchenne. The platform also provides user-friendly information to help families deal with the complexities of DMD.

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Platform resources include a “Duchenne-opedia,”a glossary of useful terms, and a primer on raising levels of dystrophin — the protein missing in DMD patients.

A platform section allows caregivers to share their responses to commonly asked questions about diagnosing and treating the disease, including on matters like talking to a doctor about an exon-skipping therapy. Likewise, the Duchenne Heroes page shares families’ varying paths to a diagnosis and points they’ve learned about disease management.

“It means a lot to talk to our family to participate in the Duchenne Heroes program as we know how life-changing a Duchenne diagnosis can be,” Elizabeth Cojeen, a Duchenne Heroes member and mother of Emmett, who has DMD, said in a press release.

“The biggest lesson I’ve learned since my son Brantley’s Duchenne diagnosis is that there is no clear-cut path or single solution for a lot of life’s transitions,” said Dianna Marlow, another Duchenne Heroes member. “Our family’s journey, like everyone else’s, is unique when it comes to things like schooling, independence and accessibility. As Duchenne Heroes, we’re proud to share our experiences if it helps to bring ideas or encouragement to other families.”

More Duchenne Heroes stories are planned, underscoring the diversity of perspectives on topics pertinent to the DMD community. Duchenne Heroes’ stories also will be shared across NS Pharma’s social media platforms, and participants are expected to appear at advocacy events in the coming year.

“Our goal is to make a positive impact in the lives of people living with Duchenne by providing helpful information and uplifting voices from the community,” said Gilberto Gil, NS Pharma’s director of patient and caregiver marketing.

NS Pharma, which markets the approved exon-skipping therapy Viltepso (viltolarsen) for DMD, is a subsidiary of Nippon Shinyaku.